My story starts as a six-year-old boy in the late 1950s. My asthma was ongoing and terrible since I was three years old. Our family doctor came over all the time with shots for me. I was given a scratch test for allergies and was allergic to everything they tested me for.
That winter, my hands started to turn paper white and the pain was terrible. I could not run or make snow balls. I thought life was terrible and I guess it was. As time went on my hands got worse not only did the cold cause it but stress did also. Although I was only six years old, my doctor asked me if I smoked. Of course not!
My mom was going downhill at the same time. She was hypothyroid and was having a nervous breakdown. She left us when I was eight years old and things got worse. Little did I know she was suffering from an autoimmune disease also like her mom who had rheumatoid arthritis (RA).
My arms and legs now had small bumps on them so I was to embarrassed to go swimming. At the same time my hands started to get wounds that did not heal. They would ooze with white stuff and the skin got hard.This prevented me from playing baseball, which was the only sport I could play without running that far, since I could not throw the ball.
When I went through puberty my white hands mostly went away, along with my lung and allergy problems. My father died just before my seventeenth birthday. He was my only pal, my hero. He had suffered a stroke years before. He developed red blood vessels all over his face, so I now wonder if he might have had an autoimmune disease, also.
At seventeen I joined the Army. I always wanted to be a soldier, maybe because it was the closest thing there was to having a family. I loved it even though Vietnam was going on. I did great during basic and advanced training. I had friends and a family again. Then it was winter and I was out in the field and got a small cut on a finger and it would not heal. I also had pain and my fingers were white again. I was taken to the medic and then to the hospital. I was there a week and almost lost the finger. The head rheumatologist came in to see me and took pictures of my hands for his class. (Wow, the thing that had caused me so much pain was now becoming famous.) But that was the end of my military career and my new family.
So at age eighteen, I had an Honorable discharge, and as I got older I felt lucky that I did not see war. After that it did not bother me much and then not at all. All those years I really did not know what I had and did not really care as long as the pain was not there anymore.
About thirty years passed, and then—BAM !—I got a heart blockage, stroke, liver biopsy due to elevated enzymes, skin rash, high blood pressure, very high ANA and other positive tests results and I got my painful friend back but now with a name for it: Raynaud's ! I finally got diagnosed with Systemic Lupus Erythematosus (SLE), fibromyalgia, then Antiphospholipid Syndrome (APS) was added along with myasthenia gravis (MG). And now after more symptoms, I also have scleroderma.
I do not know if all that happened to me at six years old was connected to all this, but looking back on it now, I think it was.
By the way, I have four children, three grandchildren, and the best wife a man could ever dream of. Miracles do happen. No sickness or pain can make me sad now. Everyday I wake up, I thank God for my true blessings.
Email: Withheld by request
Story edited 09-22-04
Story posted 9-24-04 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Cardiac (Heart) Involvement
High Blood Pressure
Rheumatoid Arthritis (RA)
Systemic Lupus Erythematosus
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: