My son B. J. was no different from any other toddler until one day in preschool, the teacher reported to me that he was having difficulty cutting with the scissors and with finger painting. I started to notice shortly after that he was not as active as other children, and he was not able to use his hands like other children. B. J.'s right fingers were becoming a bit crooked.
His pediatrician suspected it could possibly be arthritis and immediately sent us to a pediatric rheumatologist. In December of 1995, the pediatric rheumatologist ordered a number of blood tests every two weeks. My son was so terrified of needles that it took my mom, another person, and me just to hold him down. It broke my heart to see him this way.
After the first blood test came back, the pediatric rheumatologist was not sure what B. J. had. He mentioned it could be juvenile rheumatoid arthritis (JRA), lupus, or leukemia. I had to wait a month to find out what he had because the hospital kept losing his blood test.
Finally, when he was four years old, he was diagnosed with JRA and put on anti-inflammatories for pain and stiffness. He had a hard time getting in and out of a car or bed. There were times he would fall to the ground and could not walk because of the pain. There was no improvement, so I decided to take him to another pediatric rheumatologist. This doctor agreed that B. J. had JRA, and put him on methotrexate.
By this time, he had started missing a lot of school. He could not play a lot of outside activities with the kids his age. After months of this treatment, B. J. still showed no improvement. On the right side of his arm, he developed light and dark skin pigmentation. The doctor thought it was fungus. B. J. started to lose his hair in the back. He no longer had prints on the bottoms of his feet, and his right leg was shorter than the left. Because B. J. was so stiff and his skin was becoming tight, his doctor decided to send him to the rehabilitation unit at Children's Hospital. He had to have seven hours of physical therapy and occupational therapy for five weeks.
It was just a few days before he was to go into the hospital when I noticed he had a brown, shiny spot on his stomach. I called the doctor, who looked at B. J. as soon as he arrived. The doctor examined him and ordered some blood tests. In a couple of days, I heard the word "scleroderma" for the first time. When the doctor said this word, I thought, "sclero what?" I only received one pamphlet to read about this disease. It was mentioned to me that there is not much information about this disease, especially in children.
After I read just about everything on systemic scleroderma, I thought my son was going to die. Because I knew nothing about scleroderma, I thought there was only one type. I was wrong, because my son has linear scleroderma. After all this time, we thought my son had JRA when he actually had juvenile scleroderma (JSD). I could not believe he was misdiagnosed all those months. To find out that there is no cure for scleroderma just broke my heart all over again.
I became depressed for a year. Then finally, in August of 1997, I decided to accept scleroderma into my vocabulary. I was not going to let the disease run us; we were going to run the disease. I started educating myself more on scleroderma and educating the schoolteachers about it.
After two years, in August of 1999, I realized there was not enough support for parents of children with JSD. I decided I was going to turn our negative experience with scleroderma into something positive for us and for other parents. That's when I founded the Juvenile Scleroderma Network (JSDN), which I run out of my home. I have found the best therapy for dealing with your own child's chronic illness is to participate in a support group of similar issues regarding children.
Now B. J. is nine years old, and JSD continues to progress throughout the right side of his body. He had hand surgery in January 2000 to help correct the deformity in his wrist and fingers. Of course, at times he gets really upset that he can't do what other kids his age can do.
My son is my inspiration, because I admire how he tries to live a life without limitations and frustrations, dealing with a disease every day. It takes a lot of courage to get up every morning to see what challenges will come his way. There are times I think he handles having JSD better than I do.
I truly believe there is a reason why JSD came into our lives: to help other families with children who have JSD until there is a cure. And beyond that cure, I will always be here to help others and learn from my son.
Email: [email protected]
Story posted 3-23-00
Story edited VH1: JTD 9-4-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Juvenile Scleroderma Stories
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.