Karin M. Amour
I was reviewing the website about the program Who Cares: Chronic Illness in America and was saddened to see that under your list of chronic illnesses, you were missing two that were listed under the patient stories: fibromyalgia and CFIDS (chronic fatigue immune deficiency syndrome). Both of these illnesses are real and debilitating. I think if you read the patient stories you'll see that these people have been severely affected by the symptoms of these most difficult to treat syndromes.
I represent the National Fibromyalgia Association, based in Orange, California. As Secretary on the Board of Directors, I can speak not only from my personal experience with FM and CFIDS but for all of our board members that have the illnesses. I have been disabled from my job since 1996 and see no future possibilities of going back to work.
I applaud you for the work you've already done on this program and look forward to viewing it when it comes to our PBS stations in November. But in the same vein, I would hope that you could include these horrible illnesses with your list of chronic conditions. If that happens, maybe we could even look at including your program in our events listings as well as our online newsletter which go out to thousands of people on a regular basis.
Karin M. Amour, MBA
National Fibromyalgia Association
Karin M. Amour, Fibromyalgia
Lyssa Bode, Chronic Fatigue Immune Disfunction Syndrome
Frankie Campling, Chronic Fatigue Syndrome
Laura Cerasuolo, Fibromyalgia/Myofacialsyndrome
Karen Cerio, Fibromyalgia
Rhonda Dewinter, Various Immune Diseases
Jennifer Embree, Fibromyalgia/Raynaud's Syndrome
Lynne Enman, Turner Syndrome/Various
Fibromyalgia Patient, Covington, KY
John Kennedy, Chronic Fatigue Immune Disfunction Syndrome
Susan Larick, Fibromyalgia
Melissa Lawler, Fibromyalgia
Irene Leeder, Fibromyalgia/Various
Cait Lommel, Pseudotumor Cerebri
Jennifer Munn, Chronic Lyme Disease
Robin Poole, Fibromyalgia/Lupus
Pam Schmidt, Phenylketonuria
Lynn Tonoli, Various
Various Patient, Haughton, LA
Suzanne Witt, Muscular Dystrophy/Fibromyalgia
WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager