Scleroderma Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Scleroderma. For the discussion boards, we ask that you keep your full name and location private.

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important

Founder of the TransGlobal Health Community Center at

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:

I was diagnosed 6 years ago with scleroderma and recently with lupus. Yuck!

I’ve had scleroderma for 13 years and got the information I needed to be correctly diagnosed in part from the internet in 1995.

At that time, there wasn’t much out there for scleroderma patients - one website, called “I Have Scleroderma” created by Kate Nance, who was profoundly affected by the disease and eventually passed away because of it. She encouraged me to create a Usenet newsgroup called, which exists today.

Shortly after this, websites and forums began explosive growth, and Kate and I created one of the first Yahoo “Clubs” (now Groups.) Today this group has 325+/- members with a moderately active email list/forum, and several of us meet each Thurs. at 8:00P ET for chat at another location.

I became involved in the Scleroderma Foundation early in my disease and have served on national committees and task forces, and worked on their early website. Today I’m a director and volunteer for the Scleroderma Foundation, Ohio Chapter, serve on the Dublin, OH walkathon committee, and act as support group leader for the long-established Columbus, OH support group.

Only about 20% of diffuse systemic patients experience some form of scleroderma renal crisis (SRC) and I’m one of the “lucky” ones! This complication reared its ugly head 6 years after diagnosis (another oddity) and gave me the great pleasure of being on my back for most of 2001. Fortunately, I had extremely good care from Dr Maureen Mayes and was put on ACE inhibitors early enough to prevent severe damage. I still have some residual kidney damage and fight to control my blood pressure.

For now, my scleroderma is stable. I’m developing some more problems related to aging, and it’s often hard to tell what’s scleroderma or fibromyalgia (which I was diagnosed with prior to scleroderma) or just plain old gettin’ old!

Hi Debbie!


I am a mature female who has suffered with a rare form of scleroderma called MORPHEA I have been treated with Methotrexate–unsuccessful–and told that it was not life-threatening and that was that. I have scar tissue that on occassion becomes as hard as a rock and deposits in my body that are filled with ‘fibrous’ material and also hard to the touch. My nails become surrounded by hard, dead skin to the point of fissures. Apparently my type of morphea is not systemic–or so I’ve been told–and I am grateful for this. I have bouts of fatigue that are debilitating and since I have a few other medical problems I count myself as a fortunate person to still be around. I wonder if anyone in this group has this morphea and would, if you do, you share your symptoms with me. Thanks. Blessings to you all.

Hi, My name is Maria. I live in Ocala, Fl and was diagnosed with Diffuse Systemic Scleroderma about 7 years ago. I would love to chat and develope friendships with others who understand the callange of living with scheroderma.

Hello, My name is Maria. I’m new to this site and very thankful for the support. I was diagnosed with Diffuse Dystemic Scleroderma about 7 years ago and currently live in Florida. I moved here to reduce some of the raynold attacks, and seems to be working well so far. I am married with 2 children, Brittney is 17 and Leah is 9. I treasure each day with them because my health gets me thinking about the worse sometime. I am unable to work so I started an online business to keep myself busy and keep them fingers workin. I use the commission I make to help pay for my perscriptions so if you or anyone you know goes online to book there travel please look at my site.

I know this is a desperate move and I will understand if the owners of this site just kick me off. But, I need the help.

Thank You,
Maria B

I have several conditions. maybe someone can relate
to me.
My name is linda, married, 1son, 2 dogs.

my daughter has diffuse scleroderma

My name is Denise; my mother was diagnosed with Scleroderma in 1983, she passed away in 1999. My mother was a strong courageous woman who battled this mean disease for years. I have kept her medical journals and felt it is time to share what she went through, to help bring awareness, knowledge and hope with those who have or who have love ones battling Scleroderma.
I have wanted to write or blog about my mother and her fight with this disease for some time and came across “Careplace” while on the WebMd site. I am hoping this will be a good place to start to talk and write about Scleroderma.

i was dignosed about 12 yrs. ago . because of no insurance i can’t find out what stage i’am at. i have already lost 2 fingers and recently thanks to a careing doctor had my throat strected. but for a year now i guess i have calcuim deposits coming up in different places and i guess i need to learn more to understand it and maybe fing some help. iam 48 yrs. old raising my granddaughter who is 8 now and i’av had her since she was 2 when there problems and i took custody of her. i live in ga. and there’s no chapters or studyies that i can find near me so connect me with who you think could maybe help me.

My mother was diagnosed with Scleroderma 5 years ago and with every year that has passed her condition has wrosened. I wanted to find out if there are any Spanish Speaking suport groups or literature I can obtain to give to my mother. Not only is this illness affectinger physically but it is affecting her emotionally.

I have Scleroderma as well as several related diseases and health problems. I’d like to be supported and give positive support. No pity-parties or whining, I’m pro-active and pro-help-your-self, 'cause the doctors sometimes just don’t get it.

Hello, I have been diagnosed with Crest Syndrome - slight Scleroderma. I would like to share experiences with others stricken with this condition. I find if very helpful to communicate with others that share your concerns and questions.


I am a 46 year old a-m woman diagnoised at age 14. been doing going for the most part. mines is mainly my right arm and hand

I was just diagnosed with sclerodrema,my Dr. said i have diffuse. I was tested for crest and all test came back normal. I have alot of pain in my arm s and legs .

I have localized Scheroderma (Morphea) I’ve had it for years and it is in one of it’s fast growing worst stages. I am used to playing off that I am just spotted but sometimes, I’d like to just not be so alone with it…