About Us

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 My name is Pat. I was diagnosed with Scleroderma in 1976!!!! At that time was working in the Emergency Room at Kaiser Hayward as a Registered Nurse. My hands would turn blue, get sweaty, but, I thought it was just O.K. Going to a freezer to get things out really blanched my fingers. One of the doctors noticed my hands and suggested that I see a Rheumatologist, which I did. Her diagnosis was ¡°Early Scleroderma¡± At that time I felt that I was O.K. and could cope. I think I was in denial. Around 1999 or so a friend told me about the article in the Fremont Argus about Scleroderma. I t mentioned the Support group. I was hesitant to join, but I did. In 2000 my Pulmonary doctor told me to start using oxygen when I exercised, by then I had interstitial lung disease. So I started using the oxygen when I used my treadmill. I was still working and going to school. In 2002 my husband and I went to Lake Tahoe for the weekend. We DID NOT take the oxygen along. While there I became very ill, couldn¡¯t think straight, my hands were getting discolored. So we came back to the Bay Area. That was on a Sunday, the next day I thought I was having an asthma attack or had bronchitis (ever the nurse). When I saw the doctor he immediately admitted me to the hospital, I had pneumonia. I was put on a ventilator for a week, my diagnosis was pneumonia and ARDS (Acute Respiratory Distress Syndrome) I know that I am lucky to have survived that episode. My husband was and is very attentive. My husband, friends, family and the Scleroderma Support Group prayed and gave positive thoughts for me and I will be forever grateful for their support. I do take D-Penicillin and other medications for hypertension. I did a course of Cytoxan for 1 year. At present my Pulmonologist and Rheumatologist say I am stable I have now retired from working as a Registered Nurse and am on disability. I am using oxygen about 12-24 hours a day. 

 Hi. My name is Mary Lou. I was diagnosed with diffuse scleroderma on 12/9/96. My symptoms started 3 months earlier in September with fatigue, anemia, and swollen hands, feet and lower legs. I was scared to death and I was afraid to go to a scleroderma support group meeting for fear of what I might see. However, attending that first meeting was the best thing I did. I met the most wonderful, supportive, and informative friends. They have helped me deal with scleroderma. I sought counseling for myself to be sure I was on the right track and to guide me in helping my family cope. I did not continue with counseling and I did not have my family attend. That was a big mistake. I wish I had insisted that my husband and kids go to counseling, because it would have given them someone not connected with the family to talk to. Professional counselors are experienced in dealing with the stress this disease can cause to the entire family. Scleroderma affects the entire family, not just the person.
My scleroderma primarily involves the skin. At one point, the skin on my entire body was as hard as a table top. It is now softer over most of my body. I tried d-penicillimine but felt I was getting worse, and stopped. I have mainly taken minocin (minocycline), except when participating in the relaxin drug trial and am now in a skin trial through Stanford. My skin score dropped 15 points on relaxin, and it has remained soft, I truly believe that the minocin helped. It took about 10 months before I noticed any skin softening. It was a very gradual process, but my skin got softer. Check out the website for The Road Back Foundation for more information on the antibiotic therapy.
My advice is to keep a positive attitude and don't ever give up hope. 

UPDATE: 2020

I've now had Scleroderma for 23 years.

I participated in several drug trials to soften the skin and for Raynauds.  Even though the drugs didn't get on the market, I feel they saved my life and my skin score dropped significantly on both trials.  

My symptoms are stable, but fatigue is still my biggest issue.  I am also experiencing tooth root resorption which is irreversible.  

My name is Kaelin and I have had scleroderma since 2003. I first noticed that my fingers were started to turn blue, then I began to get painful sores on them that did not heal. After showing this to my primary doctor, he then called in a specialist who diagnosed me with scleroderma. Having scleroderma has affected my daily activities and my life in general. It has changed my relationships with both my family and friends. I no longer have the energy and stamina to do many of the things that "20-somethings" do; however, I try to maintain a positive attitude and am pleased that I can continue to work and preserve much of my independence. I cope with my hands by wearing mittens to keep them warm and try to follow the instructions from my doctors. My advice to other scleroderma patients is to not give up and to look for developing treatments to help you cope and manage the disease. I feel very fortunate that I have a great support system to help me.

 My name is Nancy. I have had Raynauds for at least 25-years, and Scleroderma for ten years. I was teaching at Independence High School in San Jose, when I was diagnosed with Scleroderma. The Staff was extremely supportive and when I retired in 1994, they gave money in my honor to the Scleroderma Foundation. I asked the Department Head if they had any problems locating the Foundation. She said, no problem, once they figured out how to spell it. One of the reasons for retiring at age 60 was my commute back and forth from Pleasanton to San Jose across the Sunol Grade, which was taking longer each day because of the traffic. After retiring from Independence High School, I began substituting in the Pleasanton School District, which was only a few blocks from my home. I am still frequently substituting and really enjoy being with the students.
I am lucky that two of my grandchildren live in Pleasanton, one in Fremont, one in Saratoga, and two in Portland, Oregon. I see all of them frequently. My husband, Elvet, is also retired (but he still teaches at the evening school at Las Positas College). He is extremely helpful in the kitchen and around the house.
My main problems from Scleroderma are curved fingers with sores that take a long time to heal, which makes writing difficult. I also have lost the padding on the soles of my feet, which makes walking difficult and painful. I wear inserts in my shoes, and that helps a lot. I also need to wear gloves constantly because of Raynauds.
I enjoy going to the Scleroderma support group, not only because the members are so supportive, but also because I receive a lot of ideas about how to do things to make my life easier. 

 Hi. My name is Miki. I was diagnosed with scleroderma around 1988. At the time, my symptoms were swollen fingers. I also had a positive ANA blood test. I was placed on d-penicillamine. Around 1991, I came down with a persistent cough. Both of my arms were swollen and the skin on my arms were very hard. I could not bend my right elbow so I had to learn to eat, comb my hair, wash my face, and put on make-up with my left hand. Forget about wearing pierced earrings! I also had problems with buttons and zippers on clothes. Thank goodness for elasticized slacks and pull-over tops! I visited the doctor with my persistent cough, he listened to my lungs, and he said, "Your lungs are clear" and sent me home. I visited the doctor again with the persistent cough. This time he took a chest x-ray and could see scar tissue in my lungs (pulmonary fibrosis). I was placed on prednisone and discontinued the d-penicillamine. Within days, the persistent cough subsided and I noticed that I could once again bend my right elbow. The swelling and hardness in my arms also subsided. That year I also developed gangrene in the ring finger of my left hand. I had surgery that year on the finger tip. I have a picture of me taken that year to celebrate the 25 years I had worked for my company. You could definitely see my swollen face in the picture because of the prednisone I was taking. Since then, I have been weaned off the prednisone and am doing quite well. I take Prilosec for the acid reflux. The padding on the bottom of my feet have almost disappeared so I have to put extra padding in my shoes and wear flat-bottomed shoes. I am still working full time. I try to keep the stress level down and try to pace myself so I don't get over-tired. I am grateful to the support group for their friendship and support. We have had gastroenterologists, rheumatologists, and dental hygienists come to our meetings to give us information specifically for our problems. Our support group members inspire me to keep going with a positive attitude.