The Founder's Story
Patients with PMR/TA/GCA remark that they “feel alone”. Often friends, relatives and neighbours remark that they have never heard of polymyalgia rheumatica (PMR), Giant Cell Arteritis (GCA) and Takayasu’s Arteritis (TA). Has it something to do with arthritis? NO!
NMRFoundation invites patients to share their story! Family members might also write and present the side of the caretaker of an autoimmune patient.
The Founder, Joan Reiter’s story:
I was diagnosed by my internist physician (1999) with Polymyalgia Rheumatica (PMR). We had quickly returned from California as I was experiencing excruciating pain from head to toe. The doctor prescribed 20 mgs of prednisone. Much later I was assured the 20mgs dosage was too high inasmuch as prednisone often results in serious physical complications. Dr. David E. Yokum, who serves on our Board of Directors, advised 10 mgs is a sufficient dosage for PMR as prednisone does not cure but only masks symptoms. I started taking Tylenol, an over-the-counter drug that had proved very effective for many Support Group patients.
Accordingly, in the opinion of physicians, prednisone/steroids took me into the valley of heart failure. I had “black-hole” depression for months resulting in an inability to concentrate, proceed with my art career, or in general accomplish productive work of any nature. Horrific rashes followed: a specialist assured me that the condition would never go away! He was correct!
My husband and I did some basic research and found that the medical/scientific world knew little about PMR or its sister autoimmune diseases of Giant Cell Arteritis (GCA) and Takayasu’s Arteritis (TA). They do not know what causes them, how to diagnose or safely treat them. The medication most generally used is prednisone, a steroid with many very negative side affects. There is no known cure.
In 2000 Edward and I founded the National Medical Research Foundation, a non-profit 501(c)(3) Organization headquartered in Chandler, Arizona, chartered to address the issues of these debilitating autoimmune diseases and to find a cure!
Then came open heart surgery to repair a heart valve. Once again I was taken out of productive life to recover. One important event that helped my recovery: I had been prescribed low dose naltrexone (LDN) by my heart specialist in 2009, an “off patent” medication. LDN strengthens the immune system! LDN continues to be a life-saving drug that has successfully removed all PMR symptoms, including pain, and has lifted my spirits and taken me out of a “London Fog”!
NMRFoundation is dedicated to fund LDN clinical trials. Our FDA/Pharmaceutical system is withholding availability of a medication that could be beneficial to millions of patients. This is not right and NMRFoundation will work for change!!
“I’M A $12.00 PHILANTHROPIST! – ARE YOU?”
Joan L. Reiter, Co-Founder, CEO
ARE YOU A CACKLER OR A LAYER?
I’M A $12.00 PHILANTHROPIST! – ARE YOU?
