i never really thought much about problems with diagnosis that is until I found myself labeled as "undiagnosed". My symptoms did not fit the traditional model my physicians were most familiar with. So they could not name a disease nor give me drugs for it. Fortunately for me I finally found a physician who would listen to my story and correctly diagnosed me. But many others do not a ending to their story. INOD fills a void in our current illness care system by identifying the problems of specialization and advocating for individuals. The goals and objectives of INOD not only seek to improve the condition of individuals but of the healthcare system in general. The leaders of INOD are to be commended on their work.
My last wildride was 4/23/06, from an 8 year old wild stallion that i rescued, he caught me off guard an bucked me forward an the back of his head smacked the front of my face and skull and knocked me out, and while i was unconscious he bucked me off and i landed on top of my head breaking my neck C4,5,6,7, my diagnosis is a C4 quad incomplete. So far i have beat all the odds of what the Dr's at the U.W. Madison Hospital in Wisconsin say i wasn't going to be able to do. And that is i have regained bowel & bladder functions and i can ambulate with a 4 wheel walker, and was walking up to half a mile a day, but other problems have become. I was suffering from a low back pain that i was telling the U.W. Dr's about since 5/2006 and they where telling me my pain was coming from my cord injury, but 11 months later in 4/2007 i found out from a local Dr i had a herniated disk all that time. I was given an incorrect diagnosis by the U.W. Dr's, and being that i lived 98 miles from the U.W. hospital my local Dr's suggest i keep working with the U.W. spine surgeons, so i did and In 2/28/08 the spine surgeon from the U.W. told me i needed a L5 S1 discectomy. I let them do the surgery and my life has been going down hill ever since, the pain has only increased and my condition worsens daily, and my bowels are a constant struggle every day, then 7/1/08, they removed my gallbladder and appendix, then i was T-Boned by a Jeep SUV who ran the STOP SIGN 7/31/08. God must have a darn good reason/plan for me to keep me alive through all this. I have been in a desperate struggle searching multiple Dr's to find the reasons of my pain, and i'm given the answers of, i think your pain is/or i have no explanation for your pain and they send me and my problem to someone else, and its the same story and so on. And then i stumbled upon INOD, Miss Marianne, and she talks with me over the phone, a real voice, and someone who listens and understands, and i could feel by the truth and honesty of her voice that she really cared. And then she sent some information about having my blood checked for a vitamin deficiency, and explaining to me about all the accidents I've been in, an the shock caused to my body amongst other things, that a lot of my pain problems can come from an off balance of vitamin's in the blood. I wish i would have found INOD earlier, because maybe my L5 S1 Discectomy wouldn't have had to be done, and not one of the Dr's that i have visited or the U.W.Madision Dr's ever looked at the blood, or even suggested such a test, and to think this blood test is one of the simpler test to try first. I will be going out of state the first week in August 2010 for a 4 day intense evaluation to a spinal cord specialist and have relayed the blood test information about the Spectra cell, and the folks there found this information very interesting and are sharing this information with others in this Hospital. I feel INOD is on the right track by having the blood checked first, it is a good first step to check out first, and would be a wise thing to discuss with your Dr in a visit. Thank You for all your help. from the Proud Dad of a U.S. Marine who just return home safely from Afghanistan. Semper Fi Ray
As healthcare in the United States becomes more and more difficult to access, more mistakes are being made, and patients are suffering. Patients need to have more information than ever, and partiicpate in order to participate in their own medical decision-making. INOD, through Marianne Genetti, provides the right information at the right time, helping patients make those decisions, therefore making sure their healthcare is more accurately and effectively delivered.
It would be wonderful for this organization to expand. There is a definate need for more research and help for those with undiagnosed disorders. Doctors do not have the time to "figure" out hard to solve cases. First hand I can tell you how horribly frustrating it is to deal with someone, not knowing what is wrong with them. And also doctors who don't take the time nor care about your loved one. Undiagnosed people are rare,so not alot of services available out there. Please consider this organization.
INOD is a godsend to people like me, financially and emotionally bankrupt after many years of searching for answers to my chronic health problems, and hitting dead ends. I reached out in desperation, and met Marianne, who kindly reached out to me, with a practical new path to follow - functional medicine, and links to information about nutritional improvements that I'm sure will help improve my general condition, as I'm very underweight from years of restrictive dieting, the only partial control I've found to deal with my painful gut problems. So for me, and the many others like me, INOD is invaluable, and I hope it will flourish; it provides an essential service, in closing the gap between standard medical practices, and those of us for whom it just does not work. I truly believe that many of the so-called 'rare' diseases would not be, if they were not simply overlooked. So thank you Marianne, for your dedication, and for caring, and for shining a ray of hope when I so needed one, and giving me a nudge to not give up!
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.
When I was asked to sit on the Board of Directors of INOD,shortly after its formation, I did not hesitate to accept. I understood the need for this nonprofit because of enduring many years of misdiagnosis for my youngest son's illness. I believe that when you have a diagnosis, you begin to heal. INOD offers hope and direction to those who need help the most. INOD's founder, Marianne Genetti, possesses a vast amount of knowledge in medical diagnosis, partly from all of her own difficulties with being diagnosed and partly from educating herself. INOD is truly a nonprofit whose time has come.
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.
I searched for healing from a debilitating undiagnosed chronic illness for more than 10 years. My journey eventually led me to philosophies, treatments and techniques that helped to vastly improve my life. I was fortunate to meet Marianne at a time when I was looking to share all that I had learned about health and healing...I was so inspired by her desire to give back and help others, that I created a website (HealWithHope.com) and got involved in other ventures that are geared to empowering others to find healing in their own life
Marianne Genetti, the founder, is extremely dedicated to INOD. I have helped Marianne with publicity and in trying to get the word out about INOD and to help them accomplish their mission goal.
I had been suffering from a disease for over 7 years, and after going to many doctors, I decided to go to NOR.s conference in hopes to find a doctor or member that could find out my illness. After contacting various doctors and representative at NOR and not having found anyone that could help, I was ready to give up. Them I met with the Founder of INOD and she told me my illness was a rear disease,she helped me, she researched my symtoms, and my medical records, and have me the hope and guidance I desperatelly needed. I went to the right place and was told by the doctor I have iosonophylia phasiatia. I am on the medication and treatment and I am doing great. All thanks to the help of Ms. Genetti of INOD.
About a year ago, I found INOD on the web. They told me about about glycogen storage disorders and a six hour glucose tolerance, as an unexplored option to my low at blood sugar levels (62), and severe fatigue...Then I never heard from then again! Then in June 2010, INOD e-mailed me, and asked me to write a review for them, so they could get funding...I emailed them back asking how INOD could help me. I wanted to know more about INOD. I am still undiagnosed, and am becoming disabled (with muscle pain and stffness and trouble walking). I also have a stomach infection (H.PYLORI). The antibiotics did not help, and the doctor refuses to re-test me. I cough all up sputum all the time. (I lost two jobs, because of my illness, and have to work part-time, sitting down, and I am geting in debt. But, INOD did not reply with any suggestions about how they could asist me! I also sent INOD a copy of a letter I gave to the hospital asking why the infectious disease doctor did not re-test me for H.PYLORI or give me a sputum culture, after I had abnormal blood tests for infection. I was disapointed with their lack of response or concern.
I think that INOD is a much needed service. There are not enough of these kinds of organizations out there. We who are undiagnosed go in desperate search for help. Because of them I have found another new doctor to try out in my search for help.
I love this site. In 2008, my son feel ill with an undiagnosed disorder. I often felt all along in my battle to obtain medical services for him. When I found this site I got connected to other parents of undiagnosed children and to resources for my son. I instantly felt supported. I contacted the site for information and was connected to doctors across country. I was compelled to design a presentation about my son's illness as a vehicle to provide information without hundreds of pages of medical records. The site asked me if they could use my presentation as a model for other parents to follow. I felt like I was not only helping my son, but other parents as well. I am so glad to have found this site and I support anything that it does. Thank you for supporting me as well.
My mom and I have been to dozens of doctors including specialists over the years. We've had countless tests done and doctors tell us they are "stumped" and that we are "complicated cases". After we leave, they don't spend time researching the literature or calling colleagues to get an answer for us. They are only paid for their 15, 30 45 min. or hour long appointment. They have no incentive to go beyond that to find a diagnosis for their tricky patients. The patients who live without a diagnosis and their family members who watch them suffer and possibly die have a huge insentive to research the problem on their own and then take the information to the next doctor. INOD gives patients and their families a comprehensive site in which to search many rare disorders. We don't have to purchase expensive books, or leave our home to do research at a library. We can stay home and research and print from the comfort of our homes and some people can not leave to do this extra research because they are caring for a loved one who has an undiagnosed disorder. Without this site, more people will go longer without an answer. I have spent countless hours combing through the site and once or twice we thought we find the answer. Without this site, we wouldn't even have HOPE of finding an accurrate diagnosis. Some people get to a point, where the doctors feel that they have done everything they can - and so they stop and just try to manage the symptoms of a nameless diagnosis. We don't want to settle for that. We hope to find an accurrate diagnosis so that it can potentially be cured and we can resume the quality of life that we once had. This site is very valuable. I have it marked as one of my "favorites".