Comments on: Undiagnosed Diseases Program Cracks Its First Medical Case

By: george

george — Tue, 08 Feb 2011 23:13:48 +0000

I , along with millions of Americans , suffer from chronic and acute GERD ( gastro esophagual reflux disorder ). There are apparently a variety of symptoms which vary from individual to individual . There is NO CURE and the symptoms are terrible , extremely painful and debilitating . There are a plethora of drugs which make spectacular claims and do not work , or if they do , they result in a lessening but not a cure . Doctors run the battery of tests and never find anything which leads to anything and eventually they just give up , prescribing various drugs “to try” , which , basically , gets rid of the patient for awhile . I WOULD THINK THAT THIS WOULD BE A GREAT OPPORTUNITY FOR THE NIH TO FEEL GOOD ABOUT A BREAKTHROUGH THAT WOULD INCUR THE ENORMOUS GRATITUDE OF MILLIONS OF PEOPLE !

By: Pippa

Pippa — Sat, 05 Feb 2011 15:11:37 +0000

What an incredible program and how ironic that it exists in a country where a large proportion of its citizens have no or little access to diagnosis and treatment of every day disorders that are crippling and life threatening – and which we do know how to treat.

By: Karen

Karen — Fri, 04 Feb 2011 22:46:27 +0000

What a fantastic program! I have a rare disease called Cryopyrin Associated Periodic Syndrome. For a rare disease I’m extremely fortunate that researchers have identified the gene responsible and have a treatment for it. The diagnosis has changed my life and that of my family. I saw a genetic counsellor who said that well all have 3-4 “spelling mistakes” in our genes. It will be interesting to see what they find over the years. I would love to know how many people are patients of alternative therapists who have an undiagnosed rare disease.