Hi, my name is Lisa. I am thirty-nine years old and I have had scleroderma for eleven years. I am Native American and black. I am married and have two children, ages sixteen and thirteen.
My mother also had this disease for over twenty-three years and died seven years ago from complications. I also have a first cousin diagnosed with this disease three or four years ago. I have lived most of my life in Boston, Massachusetts.
I can remember when I was a child, playing in the snow and my hands becoming so cold and numb, probably because of Raynaud's, that I had to literally put them on the furnace to warm them. So I think I have had early symptoms long before I knew it.
Before my mom was diagnosed the doctors told her it was all in her head and to get rid of her husband and kids because we were making her sick and crazy. I still remember the day she quit her job and was 'disabled.' She looked okay because she had scleroderma with no skin involvement. They told her she had about one to two years to live, so every one of those extra twenty-three years were definitely a blessing!
I knew I had scleroderma, but it took over a year to diagnose me. Finally when my skin hardened the doctors had to agree.
The first five years were hard because I was so tired and fatigued. My arms were bent and my skin was hardening. I looked like I had been in a fire. My fingers are slightly bent. I remember not being able to bend down and tie my daughter's shoes. That really bothered me.
I took several different medicines like penicillamine, acid reflux pills and naproxen. Doctors could not prove that the medicine would help. I did not want to be a guinea pig so I have used no medicines for over eight years. I also believe that all those medicines and painkillers are what killed my Mom and not the scleroderma!
For all of my eleven years with scleroderma I have had a great rheumatologist, Dr. Robbins from Harvard Vanguard in Boston, MA. He listens and really cares. He also has called to check on me because he says I wait too long to check in with him and that I downplay my disease experience and/or symptoms.
I am still pretty active. I wake up stiff and tight, but I still work full time. Don't get me wrong, I know that I am sick because I am always very tired and cranky, and my joints ache all over. But I have no more skin hardening and no internal damage yet. People are amazed when I tell them I have scleroderma as I look so normal. I no longer fear scleroderma, I challenge it.
On a sad note, I was recently diagnosed with multiple sclerosis (MS). That also took over a year to diagnose. My doctors tell me that I am one out of millions with this case of bad luck. They don't know what to do with me. I have had such a great experience with my rheumatologist that my neurologist is now severely lacking. I may have to replace him. I am now very involved with my diseases and medicines.
I use the internet often to research. I am worried and nervous. You feel like you finally have a grip on life then BAM! But I will be okay.
I would like to meet anyone else with scleroderma and MS. I raised two kids with scleroderma and have lots of suggestions and stories. My kids have even written papers for projects on scleroderma for class.
New email address needed 08-15-06 SLE
Old Email Prefix: lstar49
Story posted 3-21-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
South Boston Scleroderma Cluster
Causes of Scleroderma: Genetics
Multiple Sclerosis (MS)
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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.