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June 26, 2010

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June 26, 2010

It has been an incredible experience watching INOD develop from a thought to reality. I have enjoyed being apart of an incredible organization that has the passion and desire to make changes happen so that individuals can have the answers they need and desire. I’m still amaze at the lack of resources across the country for individuals that are suffering daily from unknown illness. It pleases me to know that INOD’s staff is there to offer support and resource options to individuals that are seeking help. My personal nick name for INOD is that glimmer of hope.

The Great!

I've personally experienced the results of this organization in...

I have personally experienced the need of organizations like INOD working for the organization. People contact us from all across the country seeking resources and options.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

I literally owe my life to INOD and Ms. Marianne Genneti. I have a rare disease called Myelofibrosis with Mieloid Metaplasia. This disease causes the Bone Marrow to loose the ability to produce blood cells in proper amounts. Three years ago I was evaluated for a Bone Marrow transplant since it looked it was the last resort left. While looking for a donor, my doctor recommended I tried a combination of two meds. Fortunatly, they worked and I no longer needed a transplant. After two years of taking those meds, they stopped working. My Doctor had no idea why. I contacted Ms. Genetti and she started asking me numerous questions. She kept asking and asking different things, what had changed, etc. Next day was a Saturday in which I prepare my pill boxes for the week. All of the sudden because of Ms. Genetti's questions I realize I was taking one quarter of on the prescribed medications. I would have ended up again in the Bone Marrow Transplant list. Bone Marrow Transplants, in the best Hospital in the world for transplants , Fred Hutchinson in Seattle, WA have only a success rate of 80%. Wouldn't you agree I owe my life to INOD and Ms. Genetti?

The Great!

I've personally experienced the results of this organization in...

my health situation

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What I've enjoyed the most about my experience with this nonprofit is...

Ms Genetti's caring and helpful ways.

If this organization had 10 million bucks, it could...

Help a lot of people!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

On July 19, 2009, I was dealt one of the most serious blows of my life. The problem was that not one of the 12 physicians/specialists I saw for my ongoing "mysterious" abdominal pain and dizziness had a clue of what was happening to my body. I was sick, very sick. I am a father, a son, a school teacher and football coach. However, I just could not function any longer with the responsibilites I had. I just knew that this was my time to die. The abdominal pain and dizziness were just unbearable. I could not get out of bed. I went from a robust, healthy 205 pounds to a thin, sickly 183 within a matter of months. For 7 months, I had no diagnosis. To make matters worse, my wife was pregant and gave birth to our beautiful baby boy; there were complications. He was born with a birth defect and he required (and still needs) hospitalization and surgery. I still wonder what I did to deserve all this destruction in my life. My blood work for the most part was fine, no red flags, test after test after test after procedure: normal. Medication after medication and nothing. I did not feel good at all. I remember one night in particular. My wife was 7 months pregnant. The dizziness and gut pain were so intense I passed out momentarily. My wife was in tears when I woke up and I remember telling her "end it babe, please end this...I don't want to live like this anymore". I endured that night and so many like that. One doctor I went to even told me "I cannot help you sue anybody or get disability; what you need is psychotherapy". I knew then that my family and I were alone in this battle. I used up my credit cards, dug deep into my savings...using them on accupunture, alternative medicine doctors and so many other. My church pastor prayed for me and my family non stop. I even went as far as emailing and calling doctors from all over the country and even Australia. Most did not and could not help (because of ethic issues). With my back and life against the wall, I don't know exactly how I came across INOD and Marianne Genneti; but I did. I remember giving her some details about my condition and then she pointed to some information about bacterial overgrowth in the intestines. I researched it further and after months of suffering and pleading with a gastro, hydrogen breath test was positive. By this time I had talked to a physician from Australia who also indicated that SIBO may be the culprit for my symptoms and post infectious IBS. Within a few weeks of starting antibiotics, I felt some improvement; not total but some. I could go on and on... but now I found a good gastro in the states that knows about the condition, is approaching it the right way and now I have a diagnosis: Post Infectious IBS. I feel about 70 % but there are times when the stomach/gut pain and dizziness are intense that I have to pause and hold on. Marianne pointed me in the right direction. She even helped me with a powerpoint that I presented to doctors try to sort my condition. A simple email and she was willing to help and of course no charge. When doctors asked me for money and no results, marianne simply gave of herself without expecting anything in return. INOD is a damn good, honest group with a fine leader at the helm. They are not in the business of diagnosing diseases; simply helping those in need, especially when doctors give up on patients with hard to diagnose illnesses.

The Great!

I've personally experienced the results of this organization in...

yes

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

It is wonderful that this nonprofit exists. We are all taught to go to the doctor when we are sick but it is never suggested that the doctor might not know what is wrong. And when that happens, there is no plan B. In Need Of Diagnosis, Inc. presents options and ways to find doctors who think differently and knows about tests that often haven't been run. It is a big help and hope to find that there are other avenues that can be investigated.

The Great!

I've personally experienced the results of this organization in...

Hearing stories of those who have called for help and hope and found some.

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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.

The Great!

I've personally experienced the results of this organization in...

consultation about my condition

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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

The Great!

I've personally experienced the results of this organization in...

they were very informative of things that maybe should be looked at first, before bigger and larger more expensive test are researched.

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What I've enjoyed the most about my experience with this nonprofit is...

to talk with a real live person,

The kinds of staff and volunteers that I met were...

real

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009

June 24, 2010

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June 24, 2010

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.

The Great!

I've personally experienced the results of this organization in...

Working directly with Marianne to help her expand her reach.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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.

The Great!

I've personally experienced the results of this organization in...

Marianne has been helpful to me to try and find interested doctors with my sons mystery illness.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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!

The Great!

I've personally experienced the results of this organization in...

Inspiration! And a helping hand when I was ready to give up!

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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.

The Great!

I've personally experienced the results of this organization in...

As a founder and director of a nonprofit, I was asked to serve on INOD's Advisory Board to provide guidance on the organization's development.

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What I've enjoyed the most about my experience with this nonprofit is...

Marianne and I have been able to assist each other with the growth and development of INOD and Birth Defect Research for Children.

If this organization had 10 million bucks, it could...

Work to influence medical schools to develop a speciality in diagnostics. Assist thousands of individuals suffering from health problems that have not been diagnosed.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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