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2013 Top-Rated Nonprofit

In Need of Diagnosis

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Nonprofit Overview

Causes: Health

Mission: In Need Of Diagnosis, Inc. (INOD) is a resource center for those who suffer with illnesses that have eluded diagnosis. INOD advocates for medical protocols that increase the accuracy and timeliness of diagnoses.

Target demographics: all individuals

Direct beneficiaries per year: 23589

Geographic areas served: International

Programs: research, support, advocacy, education and referral services to persons struggling with a undiagnosed medical condition.

Donor & Volunteer Advisory

This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

83 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

Last year I wrote a review as a volunteer, this year I get to write my review as a client: I became ill in March and began a round of doctor visits, testing, depression and frustration. My interaction with INOD allowed me to deal much better with the depression and frustration. In August I was one of the lucky ones that got a valid diagnosis. It is normally an average of 7 years to achieve that! Some of my symptoms were multiple GI issues, headaches, body pain, excessive tiredness, swelling and bloating. Turns out I have Crohn's and I am blessed that it is a mild case. the doctors finally stated the reason they could not diagnosis me earlier was because 1) it was a mild case 2) the disease itself mimicks many other diseases and 3) my symptoms would come and go. With INOD support and referral I was able to get an early diagnosis by going to a physician that practices the philosophy of functional medicine (something I had not heard of before) where they look at the body as one big machine not just parts. I am very grateful for the presence of INOD in my life and know that you would be also either as a resource for you or as a charitable organization that you support financially.

Previous Stories

Volunteer

Rating: 5

What a wonderful organization! The information and detail of options that may lead to a diagnosis were just outstanding. While they are having a backlog in timely responding to the hundreds of help requests they get when the information arrived it was so very helpful. I am so blessed to have made this contact!

Professional with expertise in this field

Rating: 5

So very impressed with this organization. It runs on a shoe string budget but reaches thousands every month. The support, empathy and information that is provided is remarkable. Being in the industry I know how difficult it is to get donations and keep moving forward when you don't "give financial help to others" but I can recognize true helpfulness and dedication when I see it!

1

Advisor

Rating: 5

The purpose of In Need of Diagnosis, Inc., (INOD) has continued dispite the lost of its founder, Marianne Genetti, earlier this year. It is so refreshing to see a small non-profit such as this take such strides to ensure the legacy that Marianne created continues. There are many activities planned for 2014 and they have helped thousands of individuals from across the world find effective treatment. I urge each of you to donate to this valuable resource.

1

Volunteer

Rating: 5

INOD was conceived and started by someone who herself went time after time to doctors and was unable to get a diagnosis. Marianne's tireless passion to find answers for herself and others lead her to create INOD. Despite her death earlier this year, INOD continues to be supported by her estate, her family, and the many individuals she inspired.

What many of us consider an illness is just a symptom or byproduct, if you will, of something else - - the root cause. The hit show "House" probably best exemplified how a doctor identifying a medical problem can be akin to a police detective solving a mystery. Unfortunately for all of us, like on the TV show, most doctors are not Gregory House. INOD serves to help individuals to find their "House" so that they too can get the answers and hopefully the cure to what ails them.

The sad reality is that an undiagnosed illness and condition could happen to anyone of us and INOD could play the pivotal role in getting an answer.

2

Client Served

Rating: 5

INOD helped me try to find a diagnosis for my son who was undiagnosed at the time I contacted them. I remember being told by many people (outside of INOD) that a diagnosis isn't the most important thing and that my child is unique even if he never gets a diagnosis. That is easier to say when you are not living life as a mother of an undiagnosed child. I had fears that my son would die because the doctors didn't know what he had. I finally got a diagnosis but continue to be a member of INOD. Because of my son's diagnosis, I found more health problems that doctor's would have never checked. I found out that people with his syndrome (Cri-du-Chat) have heart defects and asked the doctors about it. They said there was no need to test his heart, it was fine. I requested for his heart to be checked, and guess what, he has a heart defect. A diagnosis doesn't change who we are, but it does help get adequate care and does help the undiagnosed move forward and stop the maddening search to find out what the problem is! I can't say enough good things about this organization.

Previous Stories
1

Client Served

Rating: 5

The only place that offered any kind of information on my son getting a diagnosis and trying to find someone in the world tha had anything similiar to my son's diagnosis. More helpful than the doctors trying to figure out what my son had (rare genetic disorder).

2

Client Served

Rating: 5

I am a 40 year old, mom of two. They are 12 and 15. I started having problems in May 2010. I have spent over 10,000.00 now for a undiagnosed problem. The last result I received was a uncureable disease. I have contacted CDC and NCID numerous times. I have yet found anyone to answer me nor a doctor to help me. I have emailed around the world for help, INOD sent me to a different kind of doctor. Which started with hormones instead of vitamin defiency. I have started his treatment, which I some what feel better but, I am still very tired and scarred for life. Nothing can make the scars and mental emotionally go away. It would be long story to tell for the way I have got treated by your every doctors looking for their next dollar. They don't care about people. I don't understand why doctors go into this profession and could care less about you. I could not sleep at night. But, I guess they can. The most courtesy I have been shown was from INOD and the doctor they referred me to. It's a shame that CDC covers up the people that have been infected with this. I have bought into several of the cases. I have begged the schools and NCID, if nothing else, just to get me in to study this, if not for me, to help the next person. I have staphacocci hyicus. Beta-resistance. Colony is positive. I have had no treatment. As of now there is no treatment. I have got 9 different answers. I will fight to live for the love of my children. My symptoms are very tired, aching joints, ear producing bone like material, inside of nose producing extra bone like material, around nails and toenails keeps forming a shell like hard material. Same as in nose and on ear. No one really understands what I have been through and what doctors have put me through. I was told needed a infect disease doctor. The doctors that don't know what this is have said they would not write one or its all in your head. I don't understand if you know your diagnoses and medicine didn't work, then it couldn't have been the problem, and just write a referral that takes 1 min of your time, to help this person. But they wouldn't. So today, I go on fighting, I have stopped letting the doctors that care nothing for me take my last dime. I am continuing to see a different kind of doctor that doesn't study medicine. Vitamins and hormones, in hopes I soon get better.

2

General Member of the Public

Rating: 5

Months of experiencing shortness of breath and numerous doctors telling me my lungs, heart and oxygen level was perfect left me wondering about my sanity until i realized through INOD that there are thousands of people/patients out there with no real diagnosis nor help with symptoms. I quickly learned if it doesnt show up in a test and you a a female, you are considered "emotional". Until i experienced this, I really believed doctors always found out what was wrong even if it wasnt something they could heal. Now i know differently. Learning there are others experiencing this frustration helped me understand i was still a worthly individual, could make changes and adjustments in my thinking and my life and still have something to give and a reason to live. Marianne was an exceptional individual. Smart, savy and not willing to allow the medical field tell her she was not experiencing her symptoms!

Advisor

Rating: 5

INOD fills a need that the current medical model does not fill. This organization has helped countless individuals deal with their symptoms that physicians are not able to put a name to. Ms. Genetti's dedication to this cause is to be applauded.

Lynne11

Donor

Rating: 5

Marianne and her staff have helped so many people as both support and a sounding board for people how just do not know where to turn with their health issues. They are the most caring individuals and do everything in their power to point people in the right direction to learn more about their issues. We need more organizations like this one.

Previous Stories

Donor

Rating: 5

INOD is an organization that is greatly needed in our society. I have had the fortune of being able to work with Marianne and to see the hope and inspiration that she gives to everyone that contacts INOD. Most of the people that contact INOD have been through years and years of going to doctors and being practiced on to try to find out what is wrong with them. INOD is the ray of hope that they have been looking for.

General Member of the Public

Rating: 5

In Need of Diagnosis, Inc., (INOD) and Marianne Genetti serve as the voice for thousands around the country who are suffering from undiangnosed illness. The support, empathy, and understanding along with information as to resources that may be of help are outstanding with this organization.

I suffer from a variety of symptoms and for years was misdiagnosed or labeled with a disease that allowed the doctors and insurance companies to process my claims. Now without insurance and with the "label" attached it is so difficult to get a new policy. The cost of my care is a roller coaster some months I am symptom free or close to it. Other months it is a series of long, painful days and nights.

Marianne understood this and provide reference material that provided assistance in managing those rough times. Knowing that INOD is there provides me with hope that one day the true answer will come and I will be normal again.

1 Suecarol

Client Served

Rating: 5

I am a new client. For me to have the support and encouragement from INOD is amazing. To be ill is hard enough. Learning to deal with the illness, learning to make changes in your life to accomodate the things you cannot do and leaning to keep going no matter what. takes a great deal of energy. Being dismissed by doctors is hard to take - they don't know the answer and want to send you to a psychiatrist. Family and freinds begin to lose faith to after five years of no diagnois. It is hard not to give up. Thank God for INOD. THey believe and understand. Once again I have hope that there may be help out there for me. I have hope that a diagnosis will be found.

Previous Stories

Client Served

Rating: 5

For the last five years I have been to doctor after doctor to find a diagnosis. No one can understand just how incredibly hard this is unless they have been through it. I have been ill and am being told "See a psychiatrist." I have tremors, headaches, weakness and speech issues. I have been in counseling for two years and have learned to live with my condition, through my spiritual journey I have learned to celerate the things that I can do instead of focusing on those things I cannot do such as "drive." Recently I started giving up and that I would never find answers or help. I felt like no one believed me any longer that I was physically ill - this is a very diffiuclt place to be in. Then an angel came to me in the person of Marianne from In Need of Diagnosis. Someone believes me when I say I am ill, someone is going to help me find answers and help. This is a light in an incredibly dark place. I thank God for people like Marianne who listen and want to help, who are willing to look beyond the "normal" symptoms that doctors look for. Once again I have HOPE. Thank you INOD for your amazing work. What a wonderful organization reaching out to those of us who suffer without answers or help from the medical profession. May God bless this amazing organization and all those they minster to. Amen

1

Client Served

Rating: 0

i am mexican, wrote long ago for my daughter, russia angely, which has no diagnosis, I saw some doctors called in Washington and I am very happy because although we are pending a response I heard at least thank wing person I relate command with doctors and send a big kiss and hug god bless you always..

en español:
hola soy mexican ,hace tiempo escribi el caso de mi hija llamada russia angely, la cual no tiene diagnostico ,me llamaron la vieron unos doctores en washington y estoy muy feliz porque aunque estemos pendientes por una respuesta almenos fui escuchada agradezco ala persona que me relaciono con los doctores y mando mando un fuerte beso y abrazo que dios los bendiga siempre

Client Served

Rating: 4

First of all, to the person in Colorado whose 31 yr. old son with diarrhea, no appetite, etc. It sounds like your son could be suffering from neuroendocrine tumors that usually are very small and are very rare. His symptoms match those for people with "carcinoid'" and other neuroendocrine cancers. Secondly, INOD's service of trying to get an accurate diagnosis is lacking all over the U.S. I know because I've spent the last 14 yrs. trying to get an accurate diagnosis and treatment. To do so, I've gone all over the U.S. and seen 67 so called "specialists". That's the problem. Specialists specialize. They don't get the whole or big picture. There is a DESPERATE NEED for those who are educated and able to diagnose unusual diseases. So thanks to INOD for trying to fill in where no one else has!

General Member of the Public

Rating: 3

Most people don,t have to spend years looking for a diagnosis and the appropriate help that comes with knowing what is wrong. Unfortunately I have been searching for answers for many years now. INOD hasn't gotten me in touch with anyone that has helped me but they are concerned and responsive. Maybe if they were given more publicity and acknowledgement more people like myself might find some answers!

Client Served

Rating: 2

Hi sir,Thank you for offering help. My son (31 years old) story of illness for 5 years with undiagnosed chronic gastroenterology ulceration associated with diarrhea.(small unbleeding ulcers at ilume spread with the time to duodenum and colon and stomach). 4 GI specialists in Egypt and USA can't diagnosed the disease but they gave him Crohns medication and intestinal TB and other medication without any improvement or remission.Currently have stable without medication since one year butlose weight and little appetite and diarrhea . What can i do to get help?I have all medical reports and images . sicerely your : Majeed Aldamah. Denver,CO,80231

Lisette L.

Client Served

Rating: 3

Although I continue to suffer from my discouraging and debilitating maladies , I appreciate the existence of this organization which was willing to help and at least say, "Hey, we understand, and there are many, many others out there suffering, too." It's time to get the word out. Sometimes, 5 out of 5 brilliant doctors just don't know what is wrong with you.

Sharon47

Client Served

Rating: 2

I've had a vicious cough for over 20 years, all the whole seeking to find out the cause. INOD was as much in the dark as anywhere else. Even a week at the Jewish Health Center in Denver turned up nothing useful, though. I'm sure it's a synape syndrome. but INOD doesn't know anything about that.

General Member of the Public

Rating: 5

My husband has been on disability for 14 years. Many people ask "what is his disabillity" as he "looks" fine. the actual answer is that we dont know what his disability is because we have no DIOGNOSIS. He just acts in a way that would not allow him to work: he zones out, he becomes unconsious and awakens only to not know where he is. etc. NOT HAVING A CORRECT DIOGNOSIS MEANS NOT GETTING HEALED. INOD is a God send to many in this situation. They did a TV show like "House" to help figure out a diognosis but they didnt do it in real life until INOD. Why dont we have more of these places around the country because INOD can only handle such a few cases as their resources allow. The need is great!!!!!!

Susan123

Client Served

Rating: 5

When my husband had medical problems that baffled all the doctors, I took to the web. After hours of research I stumbled on "In need of diagnosis". The other members gave many suggestions and lots of support. It was bittersweet to join this community and realize that modern medicine was good at treating symptoms, but not at diagnosing the out of the ordinary diseases. Luckily for us we finally got a correct diagnosis at John Hopkins in Baltimore. My sanity was saved by this board. Thanks again.

Client Served

Rating: 5

Approximately 4 years ago, I began to be beset with an array of non specific symptoms that gradually over time became increasingly more severe. I consulted an array of over 20 doctors including 3 UCLA full professors (Neurology, Endocrinology, and head and neck) and an MD at USC who was specifically assigned to obtain a diagnosis on my behalf all without any success. About a year ago, I happened to read an article in the health section of the Los Angeles Times describing a non profit, INOD, who assisted those who had difficulty in obtaining an accurate diagnosis. (Lamentably, the LA Times, for cost reasons discontinued their weekly health section) I e-mailed INOD describing my plight. Almost immediately, I received an e-mail response from Marianne Genetti, Executive Director of INOD. She indicated that an attempt would be made to make a diagnosis from the information provided. Ms Genetti subsequently e-mailed with a possible diagnosis of B-12 deficiency. Accompanying her e-mail was a case history, many references including references to The Functional Medicine Institute with the suggestion that I consult the Institute for references to local doctors. While B-12 deficiency was not the cause of my difficulty, an D.O. referred by the Institute was. I had a gluten sensitivity! This is an emerging field where gluten sensitivity is yet to receive the acknowledgement to which it is entitled. Without INOD I would still be suffering and I mean suffering. Ms Genetti almost immediately responded in a meaningful and helpful way to all my e-mails. Without her and INODs help I would not have been guided to a resolution of what had been a baffling enigma. I would give Ms Genetti and INOD an A plus and then some.

Client Served

Rating: 3

My husband had been experiencing severe pain in his lower left abdomen for several months. He had x-rays, liver scans, colonoscopy, endoscopy many blood tests and examiniations by 3 doctors. No one could explain the pain. INOD was sympathetic to our needs but offered chiropractor or other form of healing. We didn't do either for different reasons. Although I kept questioning it at the time no one suspected that it could have been from Remicade infusions (for arthriits). However on October 31 2011 while having an infusion he had an allergic reaction and had to cease getting those infusions. About 3 months later the pain subsided and has never returned since. A good result but after many months of pain, tests, doctor visits and who know how much money was spent by our insurance company. We are just glad it is over!

Ray_4

General Member of the Public

Rating: 4

I came across INOD when I had pain and fatigue for 5 years. I had been from doctor to doctor who tried all kinds of medication. They could not figure out (and still don't know) what was wrong. None of the medications worked. INOD helped me to realize that I am not alone in my journey for diagnosis and there are others who have more significant issues than I have. I got to tell my story. I didn't expect a personal response back but that's what I got. The articles and stories are encouraging and inspiring. I never knew that there were other like me having issues with pain and the perceptions that doctors were suppose to know everything. Now I work with a great doctor to help with my symptoms. He thinks out of the box. I am feeling better than I have in 7 years. I appreciate INOD because the website gave me the will to keep searching and now I know that I don't have accept that pain will be a part of life forever.

Liz_13

General Member of the Public

Rating: 5

I was at my ends rope! For over 12 yrs. I suffered with the most horrific, new, MAN-MADE disease. Totally unknown and sci-fi creepy, so unbelievable, yet REAL!! After seeing over 18 Drs., Specialist, Forensics Pathologists, written CDC, News Stations and spending thousands of dollars just to be labeled Delusional, I was sickened to discover the Drs. I trusted with my life and get half my hard working monthly check, could care less about learning how to deal with the NEW DEADLY Diseases arising. The second they took their OATH, it was out the door, forgotten. They know everything and have no need or desire or compassion to continue learning. If they can't diagnose your problem with a pill, surgery or a psych., Drs. label you Delusional. Though this nightmare disease was extremely painful and one couldn't even make up such a frightening, more horrific disease, the pain and anguish the Health Care System put me through for so many yrs. was far worse!!! They gave me NO HOPE NO HELP NO COMPASSION, just took my $$$. I started self medicating to the point I would do just about anything to end this nightmare and pain. Death would show me more compassion and assistance than ANY worthless Dr. at Kaiser EVER did. Then, after 12 yrs of searching the Net for help in ANYWAY, concerning Morgellons Disease, and about to give up, II came across this Non-Profit (trusted them already) organization called INOD. I E-mailed my problem to INOD, I think it was just getting started at the time, and not only did THEY LISTEN and replied back THE NEXT DAY, they treated me with compassion and understanding, and believed what I told them. Without a doubt, INOD TRULLY CARES and did ALL they possibly could to assist me. INOD is, in my opinion, sent from GOD. I had the pleasure of getting to know Marianne. In fact she was the one that helped me. Mariannedis an Angel on Earth! She is, genuinely, a caring and supportive person who represents INOD to the Highest Degree. Even though Morgellons Disease is now, finally getting the attention of the public, and some Drs. are taking it seriously, Marianne and INOD has, from the start, been there for me. Even now that I'm over the worst part of Morgellons, and Kaiser even did BOGUS research on the subject to shut the public up (yet still say thousands around the world are DELUSIONAL), I still get an E-mail from Marianne, just to stay in touch. If ANYONE is in desperate need, mentally, physically and emotionally drained by so-called Medical Proffs. and have no where else to turn, please know INOD IS THERE FOR YOU in EVERY WAY!!! I thank God, I found their site. Thank you, with ALL my heart and gratitude, Marianne and ALL the other Earthly Angels at INOD for your assistance and for caring. This amazing Non-Profit Organization, IS For The People, By The people who trully care and do EVERYTHING in their power to help someone in need. INOD is EXTREMELY necessary for those who have nowhere else to turn. You WILL NOT be turned down if you haven't the money to donate to their cause but I hate to see where I would have ended up if I hadn't discovered INOD. We NEED them to watch our backs when Drs. turn their backs. Please, if you can, help keep INOD running. Lives depend on them.

Client Served

Rating: 5

My young daughter suffered for many years with an undiagnosed ailment that left her at times lying in bed in the fetal position due to severe pain. It began in early high school and continued through college negatively impacting her grades due to all the times she missed class or was in too much pain to study. At first I did not take her very seriously thinking she was a "drama queen." Nevertheless I began to take her to doctors. One after the other had a different diagnosis for the pain and not much in the way of treatment. In college she made many trips to the local ER seeking relief. It did not come and as she became more desparate, I as her mother did too. What could I do to help my baby. I had no intention of giving up but had no idea what else to do or where else to turn. That is when I began to search the internet and came across a web siter for INOD. I wrote a lengthy description of her condition but expected little or nothing in return, but I was grasping at straws. Lo and behold I received an incredibly thoughtful response with some recommendations that made sense. I then sought out providers that might be aboe to evaluate and treat her as suggested. By some miracle, the consultants at INOD hit the nail on the head. Even though my daighter still suffers intermittently from this pain, it is far less intense and she has practitioners who can treat her and provide relief. I will be eternally grateful to these kind people at INOD.

Board Member

Rating: 5

INOD fills an important role that currently is overlooked in traditional medicine and other non-profits. INOD provides emotional support and acts as a resource for individuals who have been incapable of receiving a correct diagnosys. Marianne Genetti is very knowledgeable and is able to provide helpful guidance as to where the individuals may find doctors capable of diagnosing and treating such illnesses.

Volunteer

Rating: 5

When I was 18 I found that if I walked fast for a length of time, my legs would stop working. They didn't hurt. They weren't numb. They didn't tingle. I just couldn't move them until I stood still for several minutes. Then I could again walk if I went slow. Each year, I walked slower and shorter distances until three years ago when I became unable to walk unassisted. Now I am 74 years old and I am still undiagnosed! When the doctors could not figure out what the problem was, they said it was psychosomatic. But I live alone so isn't as if there is someone to cater to me. I have also always worked (and still do) so it wasn't to get out of work. Diagnosis is still in the dark ages. New tools, new tests and new protocols for diagnosis are needed. Thank heavens INOD is championing the cause for those of us who are undiagnosed.

Ellen28

Board Member

Rating: 5

After I went undiagnosed for over 25 years with a disabling, life-threatening condition, I was grateful to find INOD. I was pleased to find other caring, intelligent people who were passionate about helping those who are chronically undiagnosed. INOD does important work communicating the plight of undiagnosed patients worldwide, and helping individual clients explore creative options that may have been overlooked by the medical community. There are very few resources for people who don't have a diagnosis, and millions go undiagnosed for years, so INOD's contributions to public health and wellness are unique and essential.

Volunteer

Rating: 5

I have suffered from being undiagnosed for many years. To discover a group of willing, experienced, compassionate survivors who have educated themselves to make the path of the undiagnosed behind them easier speaks volumes for the staff at INOD. We will join hands until we have exhausted all avenues to assist the undiagnosed in finding the care they need.

Client Served

Rating: 5

I have always lived under the assumption that if I became ill a trip to my doctor would result in a diagnosis and treatment and all would be well. Unfortunately, I have since discovered in the last 7 months that this is not always the case. I have seen many specialists, undergone many tests, tried all sorts of prescribed medications and traveled far from home to two well respected diagnostic clinics, all resulting in no diagnosis. Meanwhile my physical weakness and hopelessness increases every day. I am so thankful that I have discovered INOD. Marianne's supportive efforts and compassion on my behalf has been invaluable and such a comfort. And now I don't feel so all alone.

1

Board Member

Rating: 5

There are no words to describe the positive and potentially life-saving impact of " In Need of Diagnosis" to a patient desperately seeking to identify and treat an unknown condition which they fear, left untreated, will take their life. As a multi-decade undiagnosed patient-survivor, I can attest, firsthand, that it is often this pre-diagnostic stage that is the scariest and most life-threatening. Given the thousands of rare diseases that exist, many of which the average doctor may never see in his entire career, desperate patients are confronted with physicians unfamiliar with their symptoms... and, as a result, dismissed and/or demeaned, (without necessary treatment), left to flounder in unknown territory--with no medical backgrounds-- as they do everything in their power to save their own lives. It is during this transitional stage that "In Need of Diagnosis", and the support is offers, is invaluable. When no one else hears, INOD does, when compassion seems non-existent, INOD exudes it, when patients feel they have no one to turn to, INOD is there. Having seen over one hundred specialists, nationwide, in an attempt to unsuccessfully determine what was causing me to inexplicably lose vision, jolt awake to a background of millions of twinkling stars against a black background,-- with a force that catapulted me off my pillow, ( multiple times every night), drool, become urinary incontinent, twitch, fall into walls, lose the ability to swallow without choking, etc., it became painfully apparent that not every patient is diagnosed easily. Fortunately, my diagnostic search ended with an accurate diagnosis and appropriate treatment for my life-threatening disease...almost two decades later ! As a result, I vowed I would do everything in my power to prevent others from experiencing the diagnostic nightmare I was subjected to...but I wasn't quite sure how to go about it. Then I read an article in AARP magazine where INOD and their mission to help the undiagnosed was recognized--and I immediately knew what I had to do. I wrote to the Executive Director, Marianne Genetti, also enclosing a copy of the book I wrote detailing my experience, "But, Doctor, You're Wrong!". Subsequent to receiving it, she called me and we talked extensively about INOD's goals, the need for a specialty in "Diagnostics", how the organization supports the undiagnosed and many other aspects of this compassionate and informative organization. I told her I was looking for an avenue to share my ideas and concerns...and, after speaking with her, realized I'd found it. I was honored to be invited to be a member of The Board because it is associated with a concept I believe strongly in. While it is unrealistic to expect every doctor to know each symptom of the thousands of rare diseases in existence, (or the atypical ways in which they can sometimes present), it is unconscionable to turn such ill patients--possibly even life-threatened ones-- away. INOD doesn't do that...though they do not diagnose, they listen actively and offer support as appropriate. No matter how alone or unheard they might have felt in the past, undiagnosed patients know from their initial contact with INOD that they no longer are...which means more than words can say at such a vulnerable time. My only regret is that INOD wasn't in existence when I was searching for a diagnosis--but the important thing is that it is now !

1

Professional with expertise in this field

Rating: 5

Provides hope and resources for those not having a specific diagnosis for potentially life threatening diseases. Thinks "outside the box" for clients. Ridiculously underfunded for the services being provided internationally. Efficiently and effective in the provision of services. Always provides responses to clients.

1 Kathy58

Client Served

Rating: 5

It is very difficult being sick. It is even more difficult, not knowing why. 10 years ago I began developing strange symptoms & health problems that finally made me disabled. Today I use a wheelchair and a walker to get around. I can no longer drive. I had to sell that family home & move to a handicapped apartment. I am only 49 years old & I am looking at Nursing Homes. 10 years ago, I was a very active, full-time RN. I have been to doctors at The University of Rochester Medical Center. I have been to The Cleveland Clinic. I have just gotten back from The Mayo Clinic. Everyone can prove that I am sick. They just can't prove WHY. People like me desperately need organizations like this one. INOD cares about people like me. They UNDERSTAND. Most people don't. For many people, if you don't have a diagnosis, you aren't sick. INOD knows about those of us who remain undiagnosed. They fight for us. They are our voice. They show us compassion. There are many of us out here on the long journey to try and figure out how to stop being sick & get better. It is so nice to have INOD there to help us along the way.

1

Client Served

Rating: 5

I wrote to INOD last spring about a puzzling and painful problem my daughter was having. She had seen numerous MD's without relief. She was desparate, I was despairing. I didn't know where else to turn and decided to contact INOD as a last resort; after all, what did I have to lose? A couple of weeks later, I received a reply filled with specific suggestions and information. Deciding to follow through, I brazenly called the suggested health practitioners and asked point blank about their abilities and credentials. They all responded and were very helpful. She began to see these practitioners and one thing led to another and she has improved!! She is not out of the woods yets, but bouts are less severe and shorted in duration. She and I were at our wits end until INOD came to the rescue. I can't thank them enough for getting us on the right track. My donation will be forth coming.
Elaine

1 Janet B.

Client Served

Rating: 5

INOD staff is very caring. They send you plenty of relevant information and follow up often! I've not been able to pursue some of it just yet because of a personal situation but anyone who needs this particular service should definitely contact them. And donors and volunteers should look into this organization without a doubt! Highly recommended!

1

General Member of the Public

Rating: 3

Hello,

I am writing to mention and ask you about a specific diagnosis path that I am not sure that you do.

I have a dear friend who has had many symptoms and a painful health history for quite a few years. Although an adult, the recent diagnosis has been a relief and yet now leads to possibly years of recovery. She has spent years of visits to doctors, unbearable , unproductive testing, and medication bills that are bankrupting her., all with no diagnosis.

Her recent diagnosis is LYME disease with one its many co-infections. One co-infection is highly similar to malaria. If your group has not done any research on this disease- you must- and must suggest it to all of your members. We are on a mission to get the word out.

Go to www.underourskin.com and research Lyme disease on Youtube. You will be amazed at the thousands of people OF ANY AGE that are infected and have multiple unrelated sypmtoms- which make no sense ot Lyme-illiterate doctors of today who follow CDC guidelines and leave infected patients to continue to suffer and die without treatment. Buy the Under Our Skin DVD and be amazed at what you see and hear, or find a local screening and watch. This is a major epidemic, being ignored by the Infectious Disease group of the government, all for the purpose of not covering patients with insurance. It is a true conspiracy. This message is in no way a scam to sell DVDs! This is an epidemic that must be acknowledged and stopped. If our message saves just one of your members, then it has been worth it.

Hopefully you are telling all of your members to go immediately to Igenex on the internet www.igenex.com and request a test package, or call them and discuss it with them. Unfortunately it is highly expensive, but the most definitive, sensitive "Cadillac" test in the world. Investigate all of the Lyme websites and find a local group to discuss symptoms. There are over 50 symptoms that can define or point to necessary testing, and are all usually unrelated, which confuse today's doctors. Even if local normal blood tests (Western Blot Tests) by your average doctor show even one indicator "band", you should pursue it further by finding a Lyme-literate doctor in your area. If you don't show at least 5 bands, the CDC and your doctor will tell you that you do not have it, when you most likely do! Then they will refuse treatment. You may have to travel for hours, as we do, but it is worth every minute. See how it affects children in the documentary film, who were either infected by a tick bite- or received it through the womb, as Lyme disease is sexually transmitted. Everyone in a family MUST be tested if any one person tests positive. Hundreds of families are all infected across this nation.

Please pass this on to your members, and if you are already suggesting this research into Lyme disease, then that is wonderful, and thank you for listening to me.

1

Client Served

Rating: 5

i've been in touch with INOD Marianne for 2 long years and she has helped me in many ways that i can imagine. Although i still don't have a dignosis she has helped me to become stronger and given me hope and help to try and find a cue or a diagnosis. this is a great program becausee doctors don't have time to communicate with you hroughout your day and Marianne is always there for me with a positive response. i want to thak her fo all her help and continue with this program. v/r Tyrone Scott

1

Client Served

Rating: 5

INOD is an invaluable resource to the public. I emailed INOD several months ago about an injury that has plagued me for years. I expected some sort of a form response, as I usually get that or no response when I reach out to people with questions. Instead, Executive Director herself (Marianne Genetti) responded to my email not only very quickly but also with tangible advice. She gave me recommendations for things I could do or ask about with my doctor. I was very surprised because I had expected a brush-off. Instead, she was so kind to me when I very much needed the kindness. I responded to her with a follow-up question, to which she also quickly responded back. I am sure if I needed additional advice, I could reach out to Marianne and she would be there to help. Thank you very much.

1

Client Served

Rating: 5

INOD is an amazing organization that provided genuine care and support when all my family had was a world of non-definitiveness. Though INOD obviously did not have the answers that we needed from a Doctor, they provided support, resources and most importantly, an ear to listen and cry to and that made a huge impact for my family.

1

General Member of the Public

Rating: 5

Personally, I have not had experience with INOD, but realize the important of knowing that INOD exists, should my family, friends or myself ever be in need of an accurate diagnosis of an unusual medical problem. I have known Marianne Genetti, for 55 years as we attended high school together. She is very intelligent, extremely hard-working and for many years greatly concerned about misdiagnosis of diseases in the medical field. She has worked relentlessly in establishing INOD.

1

Professional with expertise in this field

Rating: 5

I have known Marianne Genetti professionally for more than seven years. I found her to be bright, compassionate and more than willing to help others find answers to their medical mysteries. INOD is a beacon of light for those lost in the complex, emotionally charged darkness one can feel when there is no adequate diagnosis, and thereby, no adequate treatment. I would love to see INOD supported generously and enable it to expand its reach to help those of us in need of diagnosis. Tomorrow, it could be me or you.

6

Board Member

Rating: 5

Without a diagnosis, there is no treatment, no support, and often no insurance payment. These peopple often have no place else to turn. With few resources, founder and volunteer Marianne Genetti has been helping to work miracles for people who have no other options. There is no medical specalty for diagnosis, so many people have no idea where to turn when doctors don't know why they are ill. I came to INOD after dealing with my own illness that took years to diagnose, and three family members who had difficult diagnoses, one not yet diagnosed. Marianne Genetti (who also has an undiagnosed illness), founder and driving force behind INOD, spent time and her own funds to selflessly help others with what she has learned in dealing with her own illness. She is empathetic and unafraid to approach anyone she thinks might help her clients. She has helped people get access to computerized diagnostic programs. The only other program in the United States, the National Institutes of Health Undiagnosed Diseases program, has a limited scope and takes a very small fraction of those that apply for help. Marianne will do all she can to help anyone who contacts INOD. She is tireless in exploring funding opportunities for INOD, which now has no regular funding, but is accomplishing miracles on a shoestring budget.

1

General Member of the Public

Rating: 5

I have known Marianne Genetti since she first conceived of INOD as a response to the frustration and uncertainty of her own undiagnosed health issues. She is a tireless worker and champion of patients and has always proceeded with the philosophy of how her organization could meet the needs of patients. Many of our conversations during the inception of INOD dealt with what she could realistically achieve. Marianne determined that a combination of advocacy for changing the medical diagnosis system coupled with helping suffering individuals navigate their way through this confusing process. A top-down approach and a hands-on focus on the individual. help

1

Professional with expertise in this field

Rating: 4

It seems the more rapidly medical science advances, the more difficult it is to find the health information we need – for ourselves and for those we love. That’s where In Need of Diagnosis, Inc. (INOD) comes in. Today’s healthcare system, as we all know, is largely driven by health insurance. Do we have it? Does it cover the problems we are experiencing? Is there a better approach to the set of symptoms we are presenting? Where do we live? What is the experience of our primary care physician? Is there a family history of what ails us? What about all the media coverage on vitamins, exercise, living longer (and better)? Are our health expectations reasonable? Perhaps we need a fresh set of eyes. Perhaps we need INOD! INOD doesn’t diagnose or treat. INOD listens. And from that listening comes a ‘pattern’ . . . . . a possible new approach . . . . . a simple lab test that might have been overlooked . . . . a syndrome NIH would like to hear about . . . . . new research studies being undertaken by this or that clinic or research facility . . . . . symptoms “sound like” the Alzheimer’s Assn, Muscular Dystrophy, or other specialized non-profit who might help. In other words, a kind of medical information clearinghouse – and here’s the important part – with a real human-being interface. At INOD there is someone who will LISTEN. Marianne Genetti is the founder and current executive director of INOD. She herself suffers from an undiagnosed syndrome. She knows the pain and frustration of trying to make her legs carry her. Like all sufferers of chronic, disabling conditions, she may not be able to find a label – a “diagnosis,” if you will – for her own illness. Now a senior herself, she uses all the knowledge, contacts and expertise she has gained to help others with their search. If not for a diagnosis, or even a cure, then for large and small ways of coping. For Marianne and INOD, the life’s journey has purpose in helping others. To continue its work, INOD needs financial support and volunteers. Please contact www.INOD.org or call 888-894-9190 in Orlando, FL

6

Client Served

Rating: 5

I have sickness called immune disease disorder which I have been taken care by specialist. However, I have unknown disease which I have not been able to find out through regular doctors because everythime I have been suffering with many strange physical symptom happened to my body such as nose bleeding, rectal bleeding, sudden fatigue, paralsis of my arms and the most strange happening was and still going on is my belly suddenly blown up like 10-month pregnant woman ready to give birth and suddenly disappear. Because of all these symptoms, I have been seeing so many doctors and lab testing and so on, no doctors can tell me what was wrong with me. Some doctors think I may have mental problems. But, I had these problems everyday and no where to turn for help, I tried contact media outlet for help and contacted every media organization there was. Luckly, I have been contacted by ABC News.com and I was interviewed by the ABC and my story was in ABC News.com in internet news see at http://a.abcnews.com/Health/MindMoodNews/story?id=4403716&page=1 After the story went out, I was referred to INOD for help and I did. Since March of 2008, I was in contact with INOD and I could not tell you how wonerful this organization was. First of all, I found someone or an organization who I understood what I have been going through. I have been contacted by Marianne Genetti whom provide me such wonderful support and tried to direct me to various medical organization or doctors who may help me or guide me through right directions to find out what was going on with my unknown physical symptoms. In dealing with Marianne I have gained confidance and there are people who suffer like me with unknown symtoms. Although, I am still going to doctors and hospitals they do not know what cause my physical symptoms. Yet through Marianne and INOD, I konw and I hope some day it will be found the casue and able to cure me from this miserable suffering I am having everyday. Because of INOD, I have hope. Please keep up the good work. I can not thank you enough for all you have done for me. Sincerely, Jane

1

Donor

Rating: 5

I am a financial and moral supporter of and firmly believe in "In Need of Diagnosis" (INOD) I have a close friend, President of a large, regional institution in Northeastern Pennsylvania. Early middle age and seemingly robust and in good health, about 4 years ago, I noticed he had a slight limp but said nothing. Perhaps a racket ball injury? A few months later, I noticed a considerable limp. When asked about his limp and was he hurting, he told me he is now wearing leg braces and his health and mobility were deteriorating. No one had been able to diagnose the problem. Almost by happenstance, as he was approaching the need of a wheel chair, one of his doctor’s mentioned that he would like to try a gluten test. To make a long story short, he never ended up in a wheel chair, the braces came off and he is now healthy, fully productive and comfortable(and now drinks a better, albeit guten free vodka). All this could have been avoided, had a diagnosis been more readily available. He was one of the lucky ones. My favorite program is “House”, I see the trials and tribulations along with the pain and suffering of both patients of Dr. House and the patient’s family. While the ending isn’t always happy or pretty, it always brings home the frustration, pain and suffering of Dr. House’s patients, usually after having seen many other health care providers without success. The biggest problem with this program "House" is not it’s medical authenticity, because it is based on actual medical cases, but the fact that Dr. House and his department doesn't exist anywhere in real life. This part of the medical profession does not truly exist. There is not a specialty in diagnosis. Medical providers these days tend to be more specialists than generalists. A uncommon case can be sent from one medical provider to another, many times without a resolve. My sister, Marianne Genetti the founder of "In Need of Diagnosis" has suffered many years with undiagnosed ailments which are still with her today. She has been an intense and serious student of the medical system regarding this subject for many years. Her personal frustrations and lack of a diagnosis has caused her quality of life and her mobility to be less than desirable. I believe that INOD can be an important catalyst for bringing to the forefront, the need for more autopsies, developing a specialty of diagnosis, a resource for people who have lost all hope in finding out what physically ails them. I have been a financial contributor as well as having spent many hours discussing INOD with Marianne, who has focused most of her energy toward furthering the goal of INOD in helping people get appropriate treatment and have a better quality of life. I salute Marianne and her creation, "INOD" and encourage all to assist her in her endeavors to help people who have given up hope to find answers, and hopefully, effective treatment. Gus Genetti, President Genetti Hospitality Group INC, Wilkes-Barre, PA

1

Volunteer

Rating: 5

During my time with INOD I was a donor/volunteer and utilized my writing talents to assist in their brochures and pamphlets For me personally, INOD has given not only me the insight but also the ability to read from others what INOD has given to them in their hour of need and that is “hope”. There are many health care professionals who not only know their medical expertise, but these professionals have the talent of sharing their knowledge and wisdom about many possible medical solutions unknown to the common man/woman. Marianne Genetti has studied for many years the problems which she has encountered about her studies of the body chemistry and the vitamins and minerals which most of us have no knowledge. Sometimes just a small use of a vitamin or mineral with the correct protein or whatever can re-generate a hormone or whatever within the human body to assuage or correct a disorder which seems monumental when it really becomes manageable by the addition of a vitamin or protein which is ingested or injected into the body.

1

Board Member

Rating: 4

INOD serves a very important need in that it assists people who have medical problems that the medical field are having trouble or been unable to diagnos. It also helps those people to share information vitial to their health and to assist in putting a person in touch with help.

5

Client Served

Rating: 5

INOD really came through during my time of need! They answered my request for information promptly when others had cast me aside or told me that there was nothing that they could do to help.

1

General Member of the Public

Rating: 5

INOD serves a real need in our community. Even the hospitals are recognizing that diagnoses by medical professionals based on their limited experiences do not serve many patients. INOD takes the ego out of the diagnosis and uses new ways to share information with people who have not been diagnosed by traditional health practitioners. Our family benefitted from the caring sharing we received.

4

Client Served

Rating: 5

When I first found INOD, I literally cried! To read other people's stories, and to know that I was not on this journey alone was simply over-whelming. Upon contact, I not only received a personal written reply, but Marianne took the time to phone me to discuss my case, and to encourage me not to despair. You can not know how much that means to have some one so far away whom you haven't met care, when it seems that the medical professionals you are seeing have become indifferent due to lack of ability to "cure" the problem. THANK YOU, THANK YOU, THANK YOU!!!

4

General Member of the Public

Rating: 5

If you have pain or symptoms and you have been to the doctors but they cannot find anything wrong. This is the perfect website and group to go to. I get so frustrated because the doctors cannot figure out why I have the pain I have. I found this great website and filled out information. I was surprised when I received a written heart felt response about my symptoms and they gave me some things to try. The website contains alot of links that will help when you need of more information. I never knew it existed and that there other people are dealing with the same problems. I am glad I found it and I believe that it will be helpful for others when you are at a loss of what to do next.

4

Client Served

Rating: 4

During one of my internet searches looking for new information, new ideas, or anything that might help me figure out my health problems, I ran across INOD. I contacted Marianne, and she responded quickly and courteously. She was very friendly and empathetic toward my problems, and offered a great deal of information including tests I didn't know about and research (especially about alternative medicine) being done related to my health issues. We corresponded by email several times and I was always struck by how considerate Marianne was and how much she tried to help.

4

General Member of the Public

Rating: 2

Sadly I contacted them about my child and I was told they could not help me because he was not an adult. Perhaps they should accept people for help regardless of age.

4

General Member of the Public

Rating: 5

â– I have been everywhere and seen a lot of doctor’s and no one can seem to help they just say it’s all in my head as i continue to get worse and worse. Sometimes things are so bad i feel like i am going to pass out,my b/p goes higher and heart beats so fast i think i am going to die. The pains are so severe they knock me down and now my legs are starting too they feel like they are bruised or sunburn but they are not and my heart beats in my throat not my chest. This all started when i was 33 years old and found out i was pregnant for my last child but i am now 42 and it is worse not better they say anxiety/panic attacks but the meds did nothing except make me gain 70 pounds or more. I am lost and at my ends wits no one can help me. My symptoms included: low energy, poor stamina, sore throat, unexplained menstrual irregularity, upset stomach, abdominal pain, chest pain, rib soreness, shortness of breath, cough, heart palpitations, pulse skips, heart murmur, joint pain, joint swelling, stiffness of the joints all over my body, muscle pain and cramping, twitching of the face or other muscles, neck pinches and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis, (Bell’s palsy), double, blurry, increased floaters, light sensitivity, buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, major facial flushing and bizarre skin rashes, poor balance, lightheadedness, wooziness, panic attacks, anxiety, tremors, confusion, difficulty in thinking, difficulty with concentration, forgetfulness, poor short term memory, poor attention, disorientation, getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep, too much sleep, too little sleep, the overwhelming need to sleep for 4 hours every afternoon, and a complete intolerance to alcohol.sore on scalp,dry mouth and lips,burning to head,pins and needles in hands and feet,pain(like charlie horses) in the legs,pain,bottom of my feet pain,IBS,gas,heartburn,no libio,sex hurts,stiffness and cramps in fingers and toes,hot flashes,chills and cold, constant urge to pee,bones crack easily,disrealization,disoriention,lightheadness,dizziness,muscle twitching,feeling like a cat is purring inside my body,pain if i push on my skin bones or anything on my body,sometimes a weird taste in mouth,rib pain,eyes pain,back pain,feelings of doom and death,quickly angered,heaviness in stomach,weight gain,no motivation,afraid to leave the house, 8 years of hell,tired alot or never goes in spans,MEAN MEAN BITCH ALOT,littlest things set me off,ear/jaw pain,type the same words over and over yet type them mixed up?,hair never grows (same length since i was 10) pale skin,NO ONE WANTING TO HELP ME!!!!!!!!!! days where i can do everything and then some days where i can move and i am dying,groin pain,itchy skin,if i open my mouth i can hear my heartbeat,headaches,depression,bi-polar,crying all the time, pain in legs,pitting,weight gain,blurry vision,stomach pain,nausea,fatigue,heartburn,stomach pain,twitching,muscle aches, 1/29/09-vomiting,diarrhea,stomach pain,heartburn,weight gain,numbness,shakes,leg cramps,high eosinophils,disoriention,bloating,sick! please if you can have a heart and try to help me i am so close to just ending it that pain is soooo bad……………..god bless..tina My symptoms included: low energy, poor stamina, sore throat, unexplained menstrual irregularity, upset stomach, abdominal pain, chest pain, rib soreness, shortness of breath, cough, heart palpitations, pulse skips, heart murmur, joint pain, joint swelling, stiffness of the joints all over my body, muscle pain and cramping, twitching of the face or other muscles, neck pinches and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis, (Bell’s palsy), double, blurry, increased floaters, light sensitivity, buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, major facial flushing and bizarre skin rashes, poor balance, lightheadedness, wooziness, panic attacks, anxiety, tremors, confusion, difficulty in thinking, difficulty with concentration, forgetfulness, poor short term memory, poor attention, disorientation, getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep, too much sleep, too little sleep, the overwhelming need to sleep for 4 hours every afternoon, and a complete intolerance to alcohol.sore on scalp,dry mouth and lips,burning to head,pins and needles in hands and feet,pain(like charlie horses) in the legs,pain,bottom of my feet pain,IBS,gas,heartburn,no libio,sex hurts,stiffness and cramps in fingers and toes,hot flashes,chills and cold, constant urge to pee,bones crack easily,disrealization,disoriention,lightheadness,dizziness,muscle twitching,feeling like a cat is purring inside my body,pain if i push on my skin bones or anything on my body,sometimes a weird taste in mouth,rib pain,eyes pain,back pain,feelings of doom and death,quickly angered,heaviness in stomach,weight gain,no motivation,afraid to leave the house, 8 years of hell,tired alot or never goes in spans,MEAN MEAN BITCH ALOT,littlest things set me off,ear/jaw pain,type the same words over and over yet type them mixed up?,hair never grows (same length since i was 10) pale skin,NO ONE WANTING TO HELP ME!!!!!!!!!! days where i can do everything and then some days where i can move and i am dying,groin pain,itchy skin,if i open my mouth i can hear my heartbeat,headaches,depression,bi-polar,crying all the time, pain in legs,pitting,weight gain,blurry vision,stomach pain,nausea,fatigue,heartburn,stomach pain,twitching,muscle aches, 1/29/09-vomiting,diarrhea,stomach pain,heartburn,weight gain,numbness,shakes,leg cramps,high eosinophils,disoriention,bloating,sick! 3/16/09-looking into Pheochromocytoma,and aderniline glands,please help me 6/14/09-back pain,nausea,headaches,tired,weight gain,moodiness,numbness,cold on right side,stomach pain and all of the above! help!!! 6/19/09 -stomach pain,tired after eating,headaches,back pain,fullness,weight gain,constantly peeing there is more…

4

General Member of the Public

Rating: 5

Fortunately, our family hasn't needed to use the services of INOD;, however, we feel good knowing that there is a place to turn to if we ever do have an undiagnosed illness. Kudos to our dear friend, Marianne, for all the work she has done, and all the great ideas.

4

Volunteer

Rating: 4

While filing lots of complicated medical information I could hear Marianne Genetti on the phone with callers who had evidently been to doctors and labs and still didn't know what was wrong with their health. She is a good listener and is well-read. She also knows from long personal experience some good suggestions for a kind of doctor, a specific doctor, a test or a study, or helpful information that the person may not have already learned in their own medical struggle. This seems to bring hope to so many individuals who badly need it. She wants a single formal field established in diagnosis to help every person with any disease.

4

General Member of the Public

Rating: 5

my husband has had undiognosed illnes. we have been to more doctors and had more tests than can be counted. His illness has made him "disabled" as far as working goes. I have exhausted ourselves and resources both financial, emotional, and medically with no answer. I was about to just give up when I heard abt INOD. As I read about it, I could not believe it that there was ONE place we could go and have a CENTRAL hub to keep things together. I am in the process of putting all of our history to together so that I may present them to INOD. But just knowing a place like that exists gives us HOPE. They need more assests to keep them running to give us HOPE.

6

Client Served

Rating: 5

Being sick is a terrible experience and if you don't even know how and why you're sick, if it will end or how to control it, it is so much worse, and INOD is an excellent organization for helping people in this situation. I live in South Africa and have been sick for many years, without a proper diagnoses. I am a sixteen year old boy who simply sent an email asking for help and got it for free. Imagine that, you can simply send them an email from halfway across the world explaining your situation and they will do their best to help you; that's just amazing. INOD and Marianne Genetti have many contacts which they are willing to use to help you with your problems and for people who are not able to contact specialized doctors which they may need, this can be a great help. INOD is a great organization and I would like to thank them for helping so many people, including myself.

7

Volunteer

Rating: 5

This is a great organization that cares about people who are desperate for hope. Individuals who have undiagnosed illnesses can receive encouragement and the strength to continue when all feels hopeless.

7

Board Member

Rating: 5

I have had the privilege of knowing Marianne Genetti, serving on the Advisory Board, and watching INOD grow from its inception. Have you seen the movie, “Extraordinary Measures”? My wife and I saw it this week. Besides being a compelling story with good actors, the movie illustrates several points relevant to INOD. First, the people with untreatable or undiagnosed illness are very much alone with their illness. Doctors, co-workers, friends, and the public do not really understand. Second, the movie shows that financial profit determines whether a treatment is forthcoming. What the movie does not show is the additional isolation that those “in need of diagnosis” experience. In “Extraordinary Measures,” at a critical point when John Crowley needed a large sum of money quickly fund treatment research, he was able to reach out to those who had a child with Pompe Disease. Those who suffer from an undiagnosed disease have no such support community, no one to reach out to in order to raise money, and no one else who truly understands their lonely struggle. INOD, therefore, is very much needed because it supports the undiagnosed in many tangible ways, is creating a support community, and is working to bring to the attention of NIH and the medical community the need for attention directed to the need for better diagnosis. How many of the undiagnosed suffer from an alternate presentation of a known disease, how many suffer from an unrecognized combination of diseases, and how many suffer from an as yet undiagnosed disease? We need “In Need of Diagnosis.” It is the only voice of the undiagnosed. And, like John Crowley, Marianne Genetti has a personal stake in the undiagnosed, which continues to motivate her to find answers and help others. If you have not seen “Extraordinary Measures,” see it. If you have not explored INOD.org, do so. And, I encourage you to get involved in INOD, either by volunteering or donating. John Tatum, M.D.

6

Former staff

Rating: 5

It has been an incredible experience watching INOD develop from a thought to reality. I have enjoyed being apart of an incredible organization that has the passion and desire to make changes happen so that individuals can have the answers they need and desire. I’m still amaze at the lack of resources across the country for individuals that are suffering daily from unknown illness. It pleases me to know that INOD’s staff is there to offer support and resource options to individuals that are seeking help. My personal nick name for INOD is that glimmer of hope.

6

Client Served

Rating: 5

I literally owe my life to INOD and Ms. Marianne Genneti. I have a rare disease called Myelofibrosis with Mieloid Metaplasia. This disease causes the Bone Marrow to loose the ability to produce blood cells in proper amounts. Three years ago I was evaluated for a Bone Marrow transplant since it looked it was the last resort left. While looking for a donor, my doctor recommended I tried a combination of two meds. Fortunatly, they worked and I no longer needed a transplant. After two years of taking those meds, they stopped working. My Doctor had no idea why. I contacted Ms. Genetti and she started asking me numerous questions. She kept asking and asking different things, what had changed, etc. Next day was a Saturday in which I prepare my pill boxes for the week. All of the sudden because of Ms. Genetti's questions I realize I was taking one quarter of on the prescribed medications. I would have ended up again in the Bone Marrow Transplant list. Bone Marrow Transplants, in the best Hospital in the world for transplants , Fred Hutchinson in Seattle, WA have only a success rate of 80%. Wouldn't you agree I owe my life to INOD and Ms. Genetti?

7

Client Served

Rating: 5

On July 19, 2009, I was dealt one of the most serious blows of my life. The problem was that not one of the 12 physicians/specialists I saw for my ongoing "mysterious" abdominal pain and dizziness had a clue of what was happening to my body. I was sick, very sick. I am a father, a son, a school teacher and football coach. However, I just could not function any longer with the responsibilites I had. I just knew that this was my time to die. The abdominal pain and dizziness were just unbearable. I could not get out of bed. I went from a robust, healthy 205 pounds to a thin, sickly 183 within a matter of months. For 7 months, I had no diagnosis. To make matters worse, my wife was pregant and gave birth to our beautiful baby boy; there were complications. He was born with a birth defect and he required (and still needs) hospitalization and surgery. I still wonder what I did to deserve all this destruction in my life. My blood work for the most part was fine, no red flags, test after test after test after procedure: normal. Medication after medication and nothing. I did not feel good at all. I remember one night in particular. My wife was 7 months pregnant. The dizziness and gut pain were so intense I passed out momentarily. My wife was in tears when I woke up and I remember telling her "end it babe, please end this...I don't want to live like this anymore". I endured that night and so many like that. One doctor I went to even told me "I cannot help you sue anybody or get disability; what you need is psychotherapy". I knew then that my family and I were alone in this battle. I used up my credit cards, dug deep into my savings...using them on accupunture, alternative medicine doctors and so many other. My church pastor prayed for me and my family non stop. I even went as far as emailing and calling doctors from all over the country and even Australia. Most did not and could not help (because of ethic issues). With my back and life against the wall, I don't know exactly how I came across INOD and Marianne Genneti; but I did. I remember giving her some details about my condition and then she pointed to some information about bacterial overgrowth in the intestines. I researched it further and after months of suffering and pleading with a gastro, hydrogen breath test was positive. By this time I had talked to a physician from Australia who also indicated that SIBO may be the culprit for my symptoms and post infectious IBS. Within a few weeks of starting antibiotics, I felt some improvement; not total but some. I could go on and on... but now I found a good gastro in the states that knows about the condition, is approaching it the right way and now I have a diagnosis: Post Infectious IBS. I feel about 70 % but there are times when the stomach/gut pain and dizziness are intense that I have to pause and hold on. Marianne pointed me in the right direction. She even helped me with a powerpoint that I presented to doctors try to sort my condition. A simple email and she was willing to help and of course no charge. When doctors asked me for money and no results, marianne simply gave of herself without expecting anything in return. INOD is a damn good, honest group with a fine leader at the helm. They are not in the business of diagnosing diseases; simply helping those in need, especially when doctors give up on patients with hard to diagnose illnesses.

6

Donor

Rating: 5

It is wonderful that this nonprofit exists. We are all taught to go to the doctor when we are sick but it is never suggested that the doctor might not know what is wrong. And when that happens, there is no plan B. In Need Of Diagnosis, Inc. presents options and ways to find doctors who think differently and knows about tests that often haven't been run. It is a big help and hope to find that there are other avenues that can be investigated.