There are many success stories of people using antibiotic and obtaining remission from scleroderma –I had a bad case and am now in total remission -takes awhile but its really the best road to go in my opinion —The Western Journal of Medicine cites a study of 72 people who had implants –38 got scleroderma … Enjoy life and all it has to offer. “However, I do not feel that the results of the case study can be generalized to support the hypothesis that this frequency of TPE treatments would be equally effective with more aggressive diffuse variants of scleroderma.”. Our primary goal is to raise … Hi - I wanted to say that after dealing with this disease in '88 (onset of morphia) and '09 (onset of difuse) that I've read so many stories of remission. Do what you need to do to function. Itching seemed unbearable. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. I bought the braces to support my hands and went on with my daily activities. In 2008, I lost my Mom after a year-long battle with Scleroderma. I have never seen an explanation for this but recently found a research paper that may explain this. Benefit of Long-Term Therapeutic Plasma Exchange Treatment in a Patient with CREST Syndrome (Limited Systemic Scleroderma): A 21-Year Success Story, Click Here to receive SCL News via e-mail, Tiny RNA Molecule Found to Regulate Collagen, Fibrosis in SSc-ILD, Differences in Activity of Various Genes May Drive Scleroderma, B-Cell Depletion Therapy May Be Effective, Same But Different Photo Contest Celebrates People With Rare Diseases, EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US, New Streaming Channel Showcases Rare Disease Films. During this period, I worked at the corporate headquarters of a Fortune 10 company and took great pride in my appearance. • Scleroderma can be a very serious disease with life threatening internal organ … Personal stories - scleroderma. I then underwent a treatment of extreme high dose Cytoxan chemotherapy, completely obliterating my bone marrow, and thus my immune system, in order to force my body to remanufacture them. Linear Scleroderma Patient and Caregiver Stories. I trust Dr. Wigley with my life. Scleroderma is a chronic but rare autoimmune disease in which normal tissue is replaced with thick tissue with extra collagen. My first lesson learned was to leave a medical diagnosis up to those who know. CREST stands for the clinical features of the disease, namely calcinosis (formation of calcium deposits), Raynaud phenomenon (reduced blood flow in response to cold or emotional stress), esophageal dysmotility (impairment in esophagus contractions), sclerodactyl (localized thickening and tightness of the skin of the fingers or toes) and telangiectasia (dilatation of the capillaries, also called spider veins). As the disease progressed, a multitude of medical tests indicated that the disease had also begun to scar the tissues of my lungs, decreasing their function. Giving that kind of love and getting it in return are an unparalleled experience. In the fall of 2004, there seemed to be a light at the end of the tunnel. However, watching my life turn from that of an active 27 year old to feeling and functioning like I was in my 60’s or 70’s in less than an eight-month time frame was very difficult for me to handle. I couldn’t ask for a better doctor or better coach. I was starting to contemplate how I wanted to live ‘my new life,’ after all, I was being granted a second chance and I darn well better make it count! She told me nothing about the disease; I had to do my own research to find any information. Dr. Wigley and I decided to try some anti-inflammatory drugs to start, but they had no affect. Copyright © 2013-2021 All rights reserved. Long story short, he did, I tested positive, and then traveled to see a very experienced Lyme Literate Medical Doctor (LLMD) in Missouri where he said I also had two co-infections of Lyme: Babesia and Bartonella. However, there were some drawbacks; the treatment was drastic, experimental, costly, and complications during the procedure itself could kill me. Putting Scleroderma into Remission with Katie Spilka PH180 This week’s story features Katie Spilka who shares her story of being diagnosed with a rare autoimmune disease called scleroderma at age 16 and how CrossFit and a positive outlook have helped her put her symptoms into remission. Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. The key to feeling better is to tailor the scleroderma treatment to meet the specific needs, taking into account symptoms, type of scleroderma, age and overall health of the patient. You can email Lori at lojojpn@comcast.net. I began experiencing issues with very poor circulation in my fingers. Do what makes you happy; don’t just talk about it – DO IT! Dotty: Scleroderma, Sjögren's, Parotid Lymphoma I just know there is a wonderful future for me. The "remission" you are reading about is not remission. The thing that matters most is that you can prove it yourself! After losing my Mom to this horrible disease, our family became fully committed to supporting Dr. Wigley’s efforts to find a cure. The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. Patient stories Hearing how other people have managed can be a source of reassurance and relief—it can feel … Faces of Scleroderma. When my fingertips started to feel numb, and I had trouble using them, I knew I had carpal tunnel syndrome. At last when I was constantly itching so badly that I would dig sores into my arms, we decided to try the Cytoxan again – this time in a milder pill form. For about a year and a half, my skin was so tight, I thought it was going to rip off. Yes, scleroderma is a terrible disease, but it’s also a terribly heterogeneous disease meaning that no two cases of scleroderma are the same. AJ Miller: Linear Scleroderma I have had Linear Scleroderma since 1968, when I was 7 years old. There was a study being conducted at Johns Hopkins that could possibly put my disease into remission. Anyone experience this? https://www.sclero.org/scleroderma/types/systemic/limited/a-to-z.html Yolima: Diffuse Scleroderma After four years, my diffuse scleroderma has gone into remission. Enjoy your friends and family (even the annoying ones), sightsee, and look at nature. Scleroderma Remission You need not take the experience of hundreds of doctors that have cared for thousands of people. In an autoimmune disease, the immune system mistakes a person’s own tissues as foreign invaders and sets up a protective attack that backfires to … I’m not going to lie and say that it’s easy. However, at significantly greater frequencies (e.g., weekly), long-term TPE can lead to immunosuppressant problems similar to what is seen when patients receive immunosuppressant treatments.”. This progresses to a deteriorating way of injury, debilitation, … The foundation’s federal tax identification number is 52-1375827. Be grateful for all of these gifts – your life, your today and every tomorrow. Scleroderma is a chronic disease that can affect both the patient’s physical and mental health. Scleroderma.org functions as a sounding board for patients and carers to share their own experiences with the disease. In 1996, when the TPE treatment was temporarily suspended, researchers found the disease again progressed, with GERD symptoms reappearing. " One of the challenges of managing scleroderma is to carefully define disease activity and recognize that a natural remission occurs frequently that can stabilize the disease or, in the case of the skin, lead to remodeling and natural repair." I have not only convinced a rheumatologist that this works but also myself . “A reasonable generalization from this case study and the other published literature on TPE and scleroderma is that it may be effective at the indicated frequency for patients with relatively early stage anticentromere positive limited scleroderma,” he said. The disease is ugly, but it is manageable. Scleroderma is an autoimmune disease which causes hardening of the skin. CDC records highest-ever drug deaths in a 12-month period. If you are interested in contacting the corresponding author of this case study, you can do so at [email protected] Harris is the director of the Scleroderma Education Project, providing scleroderma patients and their families helpful and accurate information about the disease, and its diagnosis and treatment. We tried another medication to no avail as well. As described by my oncologist, “The treatment re-programmed the immune system, wiping out the abnormal cells and allowing the stem cells to rebuild a new, disease-free immune system.” Just three months after the treatment I had virtually no pain, I could walk longer distances, take the stairs, go to the office again and I could even put my own socks on and was able go horseback riding!Unfortunately, in late 2005, I began to experience a flare up of the disease. No matter what your connection is to scleroderma, you have a story to tell. This disease or its drastic treatment could kill me or I could be hit by a bus. Scleroderma is a chronic disease that can affect both the patient’s physical and mental health. There is a lot of scary and misleading stuff out there. All information contained within the Johns Hopkins Scleroderma website is intended for educational purposes only. I quick Google search of scleroderma will inevitably present you with a horror show of images and stories from sufferers of this condition. A new woman has emerged. Normally, the immune system helps defend the body against disease and infection. I may never be able to make a full fist or fully open my hands again. That quickly became secondary to my comfort. Today I’m kayaking, lifting weights and walking 5 miles a day. ; CREST syndrome is a limited form of scleroderma. Big mistake! Along with this my skin seemed to be getting very hard and thick on my hands, all of which were making it somewhat difficult to perform my job functions as an IT Consultant. Scleroderma is the most curable of the incurable diseases! I think it's important to be a part of this campaign, to raise awareness about scleroderma just so people know they are not alone. Hello Chris I don’t have scleroderma I have rheumatoid arthritis, but after just 9 months on AP I am in remission. Mary-Charlotte: Juvenile Linear Scleroderma I am now fourteen years old, and I have been in remission for about six years. For patients affected by systemic scleroderma (also known as systemic sclerosis), a chronic autoimmune disease marked by hardening of the skin and internal organ involvement, the need for treatments is well understood.. There are people with dermatomyositis, rheumatoid arthritis, multiple sclerosis, and scleroderma who’ve been able to get to remission. I am ever so grateful to have reached that understanding at such an age. In October of 2000 my life took an … Paige & Caitlyn’s Story. Use the internet sparingly. After all, who could possibly know my body better than I do…right? 136 were here. I dare anyone to find a better place to be treated than at the Johns Hopkins Scleroderma Center. Putting Scleroderma into Remission with Katie Spilka PH180 Putting Scleroderma into Remission with Katie Spilka PH180 This week’s story features Katie Spilka who shares her story of being diagnosed with a rare autoimmune disease called scleroderma at age 16 and how CrossFit and a positive outlook have helped her put her symptoms into remission. In a matter of days, I received the alarming news that I had diffuse scleroderma, whatever that was.