It Was Hard To Explain

“I didn’t like talking about the disease to anyone, because the name was hard to say, people didn’t know what it was, and it was hard to explain.”

Fairly early in her career and marriage, Diane Lee started having problems with her hands stiffening, and turning white and blue.

“My fingers were swollen and my hands were getting too weak to open jars. Initially, I was told by my GP that it was Raynaud’s Phenomenon and was asked to try to keep my fingers away from cold. Eventually, I was referred to a highly regarded rheumatologist in the Dallas area.”

At her first appointment in 1992, the Rheumatologist looked at her cuticles and could tell from the broken capillaries and a few other visible symptoms that she had an undifferentiated connective tissue disease. One year later, they confirmed a diagnosis of scleroderma. Diane had never heard of the disease, so she went online to search for more information. Though frightened by the statistics she saw, she also found out about the National Scleroderma Foundation.

“Somehow, I found out about the National Scleroderma Foundation’s Annual Conference that was being hosted in Houston in August 1998. I was a bit afraid of what I would find out, but I registered and when I attended, I was happy to learn about the research going on and to hear from so many doctors and medical professionals who could give me reliable information about this disease—or at least what they knew at the time. I still have my handouts and notes from that first conference.”

At the conference, Diane connected with the Texas Bluebonnet Chapter and would return to Houston to attend their annual patient education events and learn more and more about scleroderma, treatments, and research. Since then, Diane has been a DFW Support Group Leader, a member of the National Scleroderma Foundation Texas Bluebonnet Chapter Advisory Committee, and currently serves as the President of the National Scleroderma Foundation Texas Bluebonnet Chapter. Diane has taken advantage of many opportunities to serve and connect with others in the scleroderma community and has helped the National Scleroderma Foundation Texas Bluebonnet Chapter reach more people in need of our help.

Though Diane’s experience with scleroderma has been turbulent, with the help of her doctors and nutritional supplements, she found she could have an active life playing golf, volunteering, building strong friendships, and becoming a strong voice and leader of the National Scleroderma Foundation.

“I am grateful to the National Scleroderma Foundation’s mission of supporting people with scleroderma through research, support and advocacy, and to be able to join the battle to find a cure and give hope to people living with and affected by scleroderma.”