Dear Ira Flatow,
I love Science Friday! June 10th, Science Friday on Women’s Health was exceptionally informative and so very important to us, women. I even listened to it again this morning. I was hoping you would consider a follow up or an extension to the portion of the program, which discusses those seemingly “rare” auto immune diseases in women; specifically vasculitis: Giant Cell Arteritis (GCA), Polymyalgia rheumatica (PMR), Takayasu’s Arteritis. My mother, Joyce Spataro age 67, was diagnosed by the Mayo Clinic in Scottsdale, AZ with all three. TA is very unusual in a woman at the age of 67, as is having 3 vasculitis diseases at once.
Vasculitis diseases are not so rare when 1 out of 143 people have some form of a vascualitis disease. Some research even suggests that GCA and PMR are the same diseases. There seems to be a lack of focused research and very little public knowledge of the seriousness of these diseases. Many misdiagnosis have occurred, my mother was misdiagnosed with fibromyalgia for almost two years before being diagnosed with arteritis disease. The is terminology is confusing for average person perceiving arteritis as arthritis. Doctors are also limited by the research they have at hand in diagnosis and drug therapy. There is an imperative need for an aggressive push for better research for these diseases.
When I asked my mother’s doctor if I was a risk do to heredity she couldn’t really answer. There are no real diagnostic tools either. As your June 10th’s program indicated there seems to be some insight in estrogen’s linkage in diseases in women. My mother may loose her eye sight, her hearing and may have a stroke, not to mention the chronic pain she feels. The only relief, but not a cure is the use of steroids, which brings about other complications.
Here are some helpful resources:
I was recently appointed to the advisory board of the National Medical Research Foundation founded by Joan and Edward Reiter. Joan Reiter suffered from PMR, but nearly died from it. She is now in her 70’s speaks very strongly on getting information on PMR and GCA into as many hands as possible and on finding the cause and cure.
It would be a great service if you would do a follow up to Women’s Health on Vasculitis Diseases in women, providing more information so women can be more informed about what may be happening to their bodies. Thank you so much!