Wednesday, July 6, 2011

Education, Support, and Research for Scleroderma

Scleroderma is a chronic auto-immune disease that involves the skin and connective tissue.  According to the American Autoimmune Related Diseases Association, Inc. (AARDA), “There are two types, localized and systemic. In the localized type, the skin shows one or more patches of sclerosis (thickening and hardening). The systemic type involves the skin and the connective tissue…Systemic scleroderma involves body systems such as the esophagus, intestines, lungs, heart and kidneys. Diffuse scleroderma is a term which describes systemic sclerosis and skin changes on many parts of the body. Tight, glossy skin may be present on the trunk and upper arms as well as on the face, chest and extremities”.  Scleroderma causes a buildup of scar tissue and can damage internal organs (Scleroderma Foundation).  This is a heartless, little-known disease that, while it can be found in men, typically affects women in their thirties and forties (AARDA).  My mother was one of them.  She was diagnosed in the mid-1980’s when she was approximately 40 years old.  She was told that she had the systemic type, and that the prognosis was not good.  According to Daniel Furst, M.D., those with the severe cases of the disease, like my mother, have a 50% chance of living for five years.  My mother managed to beat the odds – she was able to live with the disease for over 26 years, before finally succumbing to it in October of 2006.  By the time the disease had progressed my mother was a candidate for a heart-lung transplant because her's had been so badly scarred and damaged. 
              
  “Scleroderma is not contagious; it is not infectious; it is not cancerous or malignant. There are an estimated 300,000 people in the United States who have scleroderma, and one third of whom have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult and there may be many misdiagnosed or undiagnosed cases as well."  While treatment is available for some forms of the disease, scleroderma is not yet curable.  Due to the fact that scleroderma is a relatively rare disease, it has not gained worldwide recognition; therefore, the research budget for this disease is relatively small.  For example, the Scleroderma Foundation, which is a leading nonprofit supporter of scleroderma research only has an average of $1 million a year to find the cause and cure for the disease.  In fact, according to the Scleroderma Foundation, “The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of NIH, provides funding for the majority of scleroderma research. Although NIH grants to scleroderma researchers have increased in recent years, scleroderma funding is still a relatively low priority.  The Scleroderma Foundation has a critically important role as catalyst—to fund and to stimulate new research and new ideas.  The Scleroderma Foundation is enlisting the support of legislators and other decision-makers to establish a higher profile for scleroderma and the needs of patients. The key to all our efforts—to ensure that productive research moves forward—is the continued generosity of our individual and corporate donors”.
  The Scleroderma Foundation’s goal of providing education, support, and research is admirable, and I know personally that it had helped my mother in the past to have an organization that helps patients and their families to cope with the disease, while helping to promote public awareness.  However, they cannot do it alone.  A yearly budget of $1 million is not going to get the job done.  Much more money for research is needed in order to find a cure.  My goal is to help spread the word about this terrible disease that I know only too well.  By getting people to understand the devastation that it causes, I hope to increase awareness and hopefully encourage people to make donations to help in the research.  My mother’s life after she was diagnosed with scleroderma was filled with pain – both mental and physical.  While she rose to the challenge like a champion, my wish is that nobody will have to go through what she went through for more than two decades
   

13 comments:

  1. Wow I never knew what a struggle these poor people have to go through. Is there anyway I could donate to the cause?

    ReplyDelete
  2. Yes, it is truly a tragic disease. You can donate by visiting the Scleroderma Foundation website at http://www.scleroderma.org/development/supportsf.shtm

    ReplyDelete
  3. This was very informative and touching and it's amazing that you've made this blog and raising awareness.

    ReplyDelete
  4. thanks for being an advocate and promoting awareness of this issue.

    ReplyDelete
  5. Wow I never even heard of this disease before. This was very touching and filled with a lot of good information! God bless you for taking the time to make this blog.

    ReplyDelete
  6. ill have my arms wide open to all those undergoing this tragedy

    ReplyDelete
  7. Thank you for informing me about this horrible disease. As stated above, thanks you for promoting awareness.

    ReplyDelete
  8. Thank you for spreading awareness of this disease

    ReplyDelete
  9. Your blog is very informative and well written. The topic is tragic, but thank you for sharing!

    ReplyDelete
  10. This is very informative! Thank you for the information and awareness!

    ReplyDelete
  11. Great job setting up your blog. It was very informative as I, like so many, know nothing of this disease. Thank you.

    ReplyDelete
  12. I'm so sorry for your loss.
    Your article is well written, informative, and heartwarming.
    Shelly was lucky to have you for a daughter, and is undoubtedly guiding you on your path to raise awareness for Scleroderma.

    ReplyDelete
  13. Thank you for those kind words, Michelle.

    ReplyDelete