 Mary Lou | 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 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. |
| My name is Minnie. I was diagnosed with Scleroderma in 1994 when I was in my mid-50's. The information I was given by my doctors left the impression that I would only live about another 5 years, devastating news for both myself and my husband. Fortunately, I had the strong support of my husband and network of friends that helped me through those times. I continued to teach 1st grade for the next two years when my health would allow, but had to take disability retirement when my kidneys failed.
I was on dialysis for about 4 months until my kidney function improved to the point that I no longer needed that treatment. My health has been relatively stable since then. I still have Raynauds in my hands along with some limitation of movement. I also take multiple medications to control my blood pressure and gastric reflux that along with the natural effects of the disease make the control of fatigue sometimes a problem. However, I find that if I manage my activities properly, I am able to live a relatively normal lifestyle. My advice to others is to take one day at a time and enjoy life's blessings as they come. The fellowship and sharing of common experiences by members of the Support Group has been very helpful in coping with this disease. |  Minnie |
 Travis | I am Travis - my wife has had Scleroderma since 1994. Numerous things go through your mind when you discover that your loved one has a chronic disease that may kill her at any time. In my case, this included thoughts about the need to adjust my priorities and expectations. Was my job too important? Do I need to spend more time and energy with the spouse? Do I need to readjust my plans for the future? How do I deal with the effects of the disease? I discovered that there is a need for the caregiver to recognize that there are limitations to what the Scleroderma patient can do. There are household chores and activities that I may need to take a more active role in doing. I tease my wife that I help with the cooking to keep her away from sharp instruments (that might damage her hands). There may also be a need to slow down the pace of shared activities to make allowances for natural fatigue and other effects of the disease. That might mean that some activities may need to be done separately. For example, on vacation trips it is OK for my wife to settle in with a good book and enjoy the scenery while I may be off tramping the trails. It is important to also take care of yourself, if you can't enjoy life, then how can she? On the other hand, be realistic. Understand the realities of the disease, make the necessary plans and adjustments that may be needed. Life doesn't come to an end for the caregiver; make the most of what you are given. |
| 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. |  Nancy |
 | 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 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. |  Miki |
 Del | Hi. My name is Delphine and I am Deaf. I was diagnosed with scleroderma in November 1989 at the young age of 49. I have had it for 13 years. As a Deaf with scleroderma, matters were very difficult, frustrating, depressing, isolated, and long suffering along with other emotional problems. I knew nothing totally about what was happening to me. I took me a long 9 months of many unanswered questions about my unknown illness before I went to see the doctors. I have undergone six hand and three foot surgeries during my scleroderma years. Healing was very slow, like forever. The surgeries were beneficial to me because they removed the great pains and discomforts. I hope and pray that I will never have other surgery, I have had enough! I am a widow, have three grown children, two sons and one daughter. I have five grandchildren, two granddaughters and three grandsons. They are the love of my life. To be involved and have participated with the Scleroderma support group is a Godsend. My loved husband Al and I always enjoyed going to the meetings and he was very supportive of me and eager to be involved. We attended the Scleroderma conferences three times and had a good time at each. I am thankful and grateful that I am provided with interpreters to sign for me at the monthly meetings. Without them I would be lost. We scleroderma support group members are like a family. May God bless all and each of us. |
| My name is Marina and I was born in 1992, in San Jose, California where I still reside. I was diagnosed with an overlap of Systemic Scleroderma in 1997. I was 5 years old in kindergarten and now I am a teenager attending regular school with adaptive PE. Overall, it has been over 10 years since I have been living with this incurable disease. The worst of it is trying to cope with the external ulcers. They can really hurt! And it takes a long time for them to heal. Ulcers can appear on my ear, elbow, and fingers. My disease is a combination of Sclerosis, Reynauds, Osteoporosis, Dermatomyositis, Rheumatoid Arthritis which all lead to the main disease Scleroderma. Since this is the worst kind, I have plaque in my lungs that has reduced its function to about 40 percent. I also experience digestive problems due to this disease too. I am a normal kid, even though I can¡¯t do certain things other kids can do, but that doesn¡¯t stop me from having fun. My parents told me before I was diagnosed my body was shutting down to where I could not eat or move an inch, because I would cry. I was described as being sucked in and malnutritioned, so when I met the rheumatologist for the very first time at UCSF they rushed me in right away and told my parents I was near death. I was so sick that I didn¡¯t remember much, but I am very fortunate to be alive today! It has been difficult for me to take a lot of medications everyday, but I have accepted it as part of my daily life. The medications help my body move and feel better, especially the stomach. Without taking the medicines I will experience heartburn, and even have episodes that could irritate and burn my throat. The best way I cope with this disease is not to think about it, because when I do it just makes me feel sad. You need to stay positive! My support group in Fremont, where I learn a lot about my disease has been an excellent place to get information. And where I don¡¯t feel alone! It is very rare and unique for a child as young as me to have caught this complicated disease. Unfortunately I am the youngest member in the support group, I am so glad they are there! I am a loving and carrying person with a good sense of humor. That is why I plan to go to college to become a nurse someday, so I can take care of chronically ill children like me! Through my experience I can help others. Living with Scleroderma, is very difficult; it limits many things I want to do, but as always I try to live my life to the fullest. Follow my dreams and laugh a lot. And pray they find a cure in my lifetime!!! Thank you mom for helping me write this in 2004. |  Marina |
 Kaelin | 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. |
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