My name is Elva and I have a son who turned twenty in March 2005. Last February, his hands began to swell. I sent him to his primary care doctor and a diagnosis of diffuse scleroderma was made on the basis of a lab test. At this time he had no other problems.
In September 2004, he began having joint pain. By November his pain was significantly worse. He had lost twenty-five pounds, and I could see his health deteriorating before my eyes. I am a nurse which made things worse, because I knew what was coming.
In December 2004, we went to Los Angles to see Dr Furst, who started him on Humira injections and thought this, along with the methotrexate would slow the progression.
In March 2005, we went back to L.A. and I knew things were not getting better. My son is unable to put on his own socks and shoes. He is very tired, and has tremendous pain. It is affecting his esophagus, and starting to affect his lungs. Dr Furst increased his Humira to every week and we have to go see him in May.
We are currently preparing for a study in Seattle, Washington. The study is stem cell transplant versus cyclophosphamide. It is very frustrating right now as we are just waiting for them to call us and get started. We also have to see if our insurance will cover the cost. Not only is it very expensive, but he and I will have to be fourteen hundred miles away from the rest of our family; my husband to two other younger children. We live near Albuquerque, New Mexico.
I am just very thankful that we are fortunate to be a part of this treatment opportunity. I had to do the research and find a doctor that could help us. Our rheumatologist in Albuquerque was only treating the symptoms and never did offer to put him on Humira. She only said that it was very expensive.
I have a close relationship with God and know that this is part of his will for our family. My faith tells me that all will turn out well and the Lord has great plans for my son. I will let you know how things turn out after the treatment. Please keep us in your prayers.
Email: [email protected]
Story edited 04-30-05
Story posted 05-04-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Scleroderma Clinical Trials
Stem Cell Transplants
PDF Brochure: What is Scleroderma?
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: