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.
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!
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!
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.
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.
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.
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).
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.
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!
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.
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.
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.
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.