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HEALTH AND FITTNESS

June is National Scleroderma awareness month

By R.J. “Cowboy” Carter

        
 Author’s note: Every person’s destiny revolves around insignificant but defining moments in his or her life. What can seem to be the most trivial moments in a person’s day will every now and then be the most important junctures of their entire existence. Be it a road not taken, a decision made in hast, or even not taking the time to read an article pertaining to a rare disease. Some folks will find this article informative; others will find it dull and boring, but there will also be a small percentage of people that will read this story whose lives will be saved by now becoming aware of a little know disease called scleroderma.
        While not unheard of in men, scleroderma primarily effects women and kills thousands between the ages of 30 and 50 each year. Scleroderma’s cause is yet unknown, it is not contagious and not inherited. What is known about scleroderma is that it’s an uncommon, multisystem disease that affects an estimated 300,000 people in the United States each year and, indirectly but clearly, affects their loved ones. It is thought that one or maybe even a number of factors pertaining to an existing genetic background may be responsible for the signs and symptoms of the disease. Manifestations of the disease include skin hardening as well as lung, kidney and heart problems in patients. Since scleroderma’s mortality rate is high, awareness is essential for early diagnosis and treatment, which will greatly help to reduce the chance of untimely death and increase the quality of life in patients afflicted. Unlike AIDS and cancer, scleroderma has few lobbyists, almost no funding for research and very little public awareness. With no known cure, scleroderma is like an invisible monster, growing stronger everyday as it stalks and claims the lives of our mothers, wives, sisters, and daughters.
       This disease not only horribly affects its victims, but also its victim’s families. Waiting rooms are filling up all across the country with family members and friends of scleroderma patients who are so distraught and confused over such an unimaginable and dire situation that they can’t find anywhere else to go. The courageous faith generated inside these waiting rooms has a way of breeding a somewhat ridiculous hope that their loved ones might somehow beat this horrible and incurable disease. But most often the disease comes on so quick and is so mentally and physically debilitating that sadly, the victims of scleroderma don’t even know their relatives and friends are massing at the end of that long cold shiny hallway.
          I’ve seen first- hand what Sclerderma can do. It was January 28th 2005 at 5:05 P.M. when scleroderma claimed my ex-wife Catherine. By that time, death came not as her enemy, but rather as her welcomed friend, for it was death that helped her finally escape the horrible pain of her earthly ties as it softly succeeded her life. Afterwards, I happened to remember a letter she had written detailing her fight with scleroderma just a few short weeks before she died. I can’t begin to imagine how painful it must have been for her to write a letter in the condition she was in, but she knew I was planning an event for sclerderma awareness and she wanted to help any way she could. What we didn’t know at the time was that Catherine would be gone by the day of the event. She had planned to read the letter herself the day of the rally, but now it was her loving sister, Christina, whose emotional address brought the huge crowd to tears as she recited the letter in her sister’s stead.

Cathy’s last letter

November 29, 2004
           My name is Cathy Carter and I was diagnosed with Systemic Scleroderma three years ago. Until this time, I considered myself a very active, healthy single parent of two adult sons. I worked full-time as a Courtroom Attendant for Sacramento County. I enjoyed staying busy, bike-riding, gardening, visiting relatives and taking care of myself.
            During the summer of 2001 I started experiencing body aches and pains (similar to the flu), severe itching from head to toe and overall fatigue. It didn’t seem to go away and by the fall my hands began to hurt and swell. I still was not that concerned and figured maybe I was just working too much and had recently moved my residence. I rarely needed to go to the doctor but thought I should see if I could get some relief since nothing was going away and I wasn’t getting better.
             I have been one of the fortunate ones to have such a quick diagnosis. My primary care doctor ran a series of lab tests and after receiving the results called me into her office. She informed me that I had a positive ANA, which indicated a possible autoimmune disease. It could be Rheumatoid Arthritis, Lupus or Scleroderma and then made a referral to a rheumatologist. I felt an instant hollow feeling in my body and was a little frightened.
              The first year of my diagnosis I continued with the above ailments plus some skin thickening in my hands, face and Raynauds. I was given some pain medications and vasodilators. By the second year I also had Esophageal involvement, more skin thickening in my arms and torso, dry eyes and mouth, a gall bladder surgery and fingertips that were beginning to dissolve. More medications were prescribed. In April of this year I was hospitalized and diagnosed with Congestive Heart Failure and given more medications. I am currently experiencing some gastrointestinal problems that have not been resolved.
               In the past three years I have taken a crash course in Scleroderma and prescription drugs. I have been to more doctor’s appointments, emergency room visits and hospital stays than some people do in a lifetime. I lost my job a few weeks ago. I am trying to live a Type “A” life in a Type “C” body! The most difficult part of the disease for me has been the extreme fatigue, body pains inside and out, the unpredictability of symptoms from one day to the next, the fear of what else can be effected, very reduced social life and financial strains. 
                I know Scleroderma effects everyone differently. People look at me and don’t notice any of the physical changes and often comment how I look good in spite of this disease. I am one of the fortunate ones who have a terrific support system. My family knows the difficulties, pain and hardships I endure everyday even though I look okay on the outside. As a Scleroderma support group leader, I hear many stories from patients that are told it's all in their head, or that they are being a hypochondriac. This saddens me because even the mildest form of this disease brings difficulties. It is my hope to bring awareness and education that one day there may be a cure for this complicated and complex disease.
     
      Cathy died less than two months after this letter was written. So, always remember, each person’s destiny hinges on defining moments in their life. The only opportunity some may ever have to secure their fate against a shadowy and uncertain future is to remember Cathy’s letter and the symptoms of sclerderma. Together we can find a cure and kill the invisible monster that stalks our mothers, wives, sisters and daughters.    
To learn more about scleroderma you can contact The National Scleroderma Foundation website at www.scleroderma.org or your local scleroderma support group.