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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.

Community Stories

34 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!

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.

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 espaƱol:
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!

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.

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!

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.

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 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

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.