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.
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.
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 !
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.
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.
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.
Marianne Genetti, the founder of INOD has been a valuable board member of our organization, Birth Defect Research for Children for many years. During this time, she conceived the idea of starting a nonprofit (INOD) that would focus on assisting individuals with undiagnosed diseases. As the driving force behind INOD, Marianne has almost single-handedly taken the idea from the concept stage to a fully functioning nonprofit that is helping people from all over the world.