“I needed help getting in and out of bed. Walking was painful. My throat closed 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 a 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 wound 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.
What was the cause?
The doctors found that my hemoglobin level was dangerously low and that my heart was working overtime to pump blood to my brain. Within a few weeks, treatment relieved the problem. But at that point, I remember thinking that anything could happen from one day to the next. I felt more helpless than ever, as if I had no control over what was happening to me.
It has been 14 years since your condition was diagnosed. What is the state of your health now?
I still live with pain, and I have a number of ailments that are associated with scleroderma. These include ulcers, lung fibrosis, and severe heartburn. Still, I refuse to dwell on my illness or waste time feeling sad. I have other things to do.
I love drawing, making clothes, making jewelry. Most important, though, as one of Jehovah’s Witnesses, I engage in the work of teaching the Bible. Even when I am not able to walk to people’s homes, I am able to assist other Witnesses who conduct Bible study sessions with people in our area. I have even had students of my own. The ministry gives my life purpose.
Why do you engage in this work when you have your own problems to contend with?
I know that the information I share with people is vital and beneficial. Besides, when I keep busy helping others in this way, I’m happier. I even feel healthier! For that brief period of time, I forget that I’m sick.
What role does the Bible play in your positive viewpoint?
It reminds me that my suffering—and the suffering of others as well—is just temporary. Revelation 21:4 says that at his appointed time, God “will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore.” Thinking about scriptures like that helps strengthen my faith in God’s promise of a bright future—not just for those who suffer with chronic illnesses but for everyone.