Undiagnosed & Rare Diseases
An undiagnosed disease is a medical condition that eludes diagnosis,
a rare disease is one that afflicts fewer than 200,000 individuals.
My Personal Experience:
For more than 10 years I went from doctor to doctor, alternative practitioner to alternative practitioner, looking for a diagnosis that would help me to understand and cure a debilitating illness that left me fatigued, dizzy, weak, and sensitive to foods & chemicals. I underwent extensive testing and though I was eventually diagnosed with Chronic Fatigue, I came to understand that this is just a label given to a condition that medical science has no real explanation or answers for. Several years ago I developed a blood clot condition that also eludes medical explanation. My doctors tell me that they do not understand why some people form blood clots with no known cause, and all they can do right now is to help control, not cure it.
At the time I realized that I had a choice to make: to focus on what I didn't know, or to focus on what I did! Allowing myself to be frustrated and disappointed wasn't going to do much other than to attract more negative energy to my life. So I decided I needed to do what I could to learn to accept my limiltations, and at the same time to do everything possible to build my strength and support my immune system so my body could begin the healing process on its own.
I created Heal WIth Hope because I know how difficult it is to live with a rare or undianosed illness, and I wanted to share all I had learned that helped me. (EFT, Meditation, Visualization, Reducing Toxic Exposure). I also discovered that undiagosed and rare diseases are not rare! There are many people out there who are looking for a diagnosis and cure that has thusfar eluded them.
There are also many great people who are using their pain and suffering to help others. Below you will find their organizations that are there to help!
Marianne Genetti, is the founder of INOD, In Need Of Diagnosis, Inc., and is working to assist people who are struggling with undiagnosed or rare diseases. INOD is a non-profit organization whose mission is to promote changes in the healthcare system to facilitate prompt and accurate diagnosis of medical disorders, especially rare disorders, as well as to provide help and support. If you have an illness that has eluded diagnosis and would like more information about INOD call them at 888-894-9190. You can also visit their website at www.inod.org, or email them at firstname.lastname@example.org. Marianne also contributed an informative article, Insights Into Undiagnosed Illness, for the September 2009 Heal With Hope Guest Columnist feature,see below for a reprint of this article.
Marianne recently informed me about an exciting program now offered by the NIH's (National Institute of Health) Office of Rare Diseases called Undiagnosed Disease Program. Each year the NIH accepts 50-100 cases for evaluation and consultation. You do need to be referred by a physican, but from the information I reviewed it does not appear that the other requirements are very restrictive. You will find more information about the National Institutes of Health Office of Rare Diseases and the Undiagnosed Disease Program, as well as information about Advocacy Groups, Research & Clinical Trials, Reports & Publications, and much more at their website: http://rarediseases.info.nih.gov or by calling 1-866-444-8806. You can also go directly to the NIH Clinical Center website:http://clinicalcenter.nih.gov.
Another site that provides information about commonly misdianosed or rare diseases is www.wrongdiagnosis.com. You can search for a disease by symptom, as well participate in a Forum where you can communicate with others who are dealing with a similar situation/condition.