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!
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.
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.
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.
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.
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.
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.
My experience on INOD has been pretty good. I am able to "blog" about my ongoing undiagnosed condition and other members respond with suggestions or offer support. I feel very fortunate that I found this online support group. Knowing I'm not the only one dealing with an undiagnosed condition gives me hope that someone out there can help me.