Jane Erickson lives in New Jersey. She had a stem cell transplant in August of 2005 to quell the ravages of Systemic Scleroderma She is 1 of 11 people nationally to have participated in the ASSIST trial over a three year period. This is her story
Thank you for inviting me to speak to you. I have talked to some of you by phone or email, and it is good to put a face with a name.
I am going to briefly tell my story and then tell you about the alternative treatment I chose, an adult stem cell transplant. After that, I will be more than happy to answer any questions you might have. I have also brought information for follow up if you are interested.
My purpose in speaking to you is to inform you of the stem cell transplant so you might be able to make an informed decision about it. I want to bring you hope. The transplant might be for you but it might not be for you. The only way you will know is to make a phone call to the doctor and ask.
When I was seven years old, my elementary school was chosen to be part of a clinical trial for the Polio vaccine. At that time Polio was rampant in the United States. Our society would do anything to protect its young. Any parent in our town who had children of school age gave permission for their children to participate in the trial.
So, every Thursday for six weeks, we all marched down to the all-purpose room and stood in line to get a shot of this red liquid. We second graders were sure we had all gotten the real thing because the stuff was red. At the end of the trial our parents were informed that yes, indeed, the vaccine was effective. And, of course, who was the only kid on our block who did not get the vaccine? You guessed it. So, back I went with the other placebo kids for six more weeks of shots. When we were finished, we each got a certificate which stated that we were "Polio Pioneers" I realize now that pioneer blood is in my genes.
I live in Maplewood with my husband of 36 years. We have two children, our son Thomas who is 29 and lives with us, and our daughter Julie 32, who lives in Vermont with her husband. Until July 1 of last year I was a choral music teacher at Millburn High School. I also taught drama and directed the plays and musicals.
I was diagnosed in 2002 after years of phantom symptoms. I stopped going to the doctor because the diagnosis was always that it "was in my head" I felt like I was the crazy woman of Maplewood. But the symptoms persisted: digestive problems, rashes, numb hands, a series of unexplained falls, and my throat began to be sore from teaching all day. It required me to have to use a microphone for the last 10 years of my career. I was out of breath. I figured it was because I was out of shape. I had never had good breath control for singing, but this was clearly getting worse. Then, my hands began to swell, and would get very cold. My primary sent me to a rheumatologist.
"You have RA. Take Prednisone. Come back in a month." All of this without of benefit of a blood test. I thought it odd that I had Rheumatoid Arthritis. No one in my family had it. I started searching the internet for the symptoms, and began to realize that I had the symptoms of another disease.
I bounded into the office the next month. "I have LUPUS!!" I cried.
"You don’t have Lupus, you’re too old."
I began to not like this guy. What I really did not like was that he did not take what I told him and do research of his own.
The third month - my disease was not getting any better, mind you - he told me to go to a pulmonologist. He could hear something in my lungs. (Continued) Page 1 of 5
http://www.allmystemcells.com/