"I Refuse to Dwell On My Illness"

"I needed help getting in and out of bed. Walking was painful. My throat close up so that I couldn't swallow my pain pills. I developed sores that wouldn't heal, some of which later became gangrenous. I had stomach ulcers and severe heartburn. I didn't understand what was happening. I was just ten years old." -Elisa.


SCLERODERMA -meaning "hard skin"-is a word used to describe diseases that afflict an estimated 2.5 million people worldwide.  The type most often seen in children is localized scleroderma, which mainly involves the hardening of the skin tissues.

Elisa, however, was diagnosed at age ten with a form of systemic scleroderma-a condition that can seriously affect not only the skin but also the function of internal organs, involving the kidneys, heart, lungs, and gastrointestinal tract. Doctors thought that treatment would prolong Elisa's life by only five years.  Now, some 14 years later, Elisa is very much alive. Although she is not cured, she maintains a positive attitude about life. Awake! spoke to Elisa about her illness and her strength to endure.  

When did you first become aware that you were not well? 

When I was nine years old, I got a cut on my elbow, and it was extremely painful.  the would got bigger, and it wouldn't heal.  A blood test revealed that i had systemic scleroderma.  Because my health was deteriorating rapidly, we needed to find  a doctor who had experience treating scleroderma.

How did your search turn out?

We found a rheumatologist. She told my parents that chemotherapy could slow down the scleroderma and extend my life by five years, with the possibility that my illness might go into remission.  The downside was that chemotherapy would compromise my immune system. Even a cold could prove fatal. 

Obviously, the worst did not happen.

No-thankfully, I'm still alive! When I was about 12, though, I started experiencing severe chest pains that would last for about 30 minutes, sometimes twice a day.  They were so bad that they made me scream. 

Next time: Conclusion of "I Refuse to Dwell On My Illness

From the AWAKE! magazine, 2015