Believe it or not, I actually look forward to it! As I was preparing to undergo this drastic treatment, I quickly became aware of and came to grips with the reality that most others don’t experience until much later in life – the reality that we don’t live forever; the reality that we don’t know what tomorrow will bring. In 2008, I lost my Mom after a year-long battle with Scleroderma. The "remission" you are reading about is not remission. This is the first study reporting the successful use of TPE for such a long period (21 years). I had to cut back my hours at work to just 20 hours a week and even that was difficult to maintain because of the fatigue and the pain. “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. No medication was administered. Either way, nobody is to know for sure what tomorrow will bring. It manifested in the form of sore achy muscles. It is important to know that unlike lupus or MS which often goes into remission periodically, that does not occur with systemic scleroderma. Recommendations for the overdose epidemic in the COVID-19 pandemic. 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 … Tagged CREST syndrome, GERD, limited scleroderma, long-term treatment, Lung Function, plasmapheresis, Raynaud, therapeutic plasma exchange, TPE. I have lived with an autoimmune disease called scleroderma for nearly 20 years now. 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 … I support the Johns Hopkins Scleroderma Center because I believe that no research center in the world is more dedicated to their patients, or more determined to find a cure, than Dr. Wigley and his outstanding team of doctors and scientists. In 2003 I was diagnosed with Scleroderma. As a result, this makes these diseases become more advanced. To soften my skin, I wore special mittens that were warmed in the microwave. I have never met anyone else with it… Alicia: Linear Scleroderma My doctor said the people who are looking at me and seeing the scars are the ones who need healing, and that I should pray for them…. I began experiencing issues with very poor circulation in my fingers. People diagnosed with scleroderma have a higher risk of several types of cancer. • Scleroderma almost always goes into remission with spontaneous improvement in skin changes and body function. I have not only convinced a rheumatologist that this works but also myself . Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. It took almost a year to get this diagnosis. I was put on medications that eased these symptoms for a short period of time, but then things got worse. Therefore, it is critical to establish a well-designed and comprehensive health care program. I am reading that many times the first 3-5 years are the most aggressive with Systemic Scleroderma. Dr. Wigley and I decided to try some anti-inflammatory drugs to start, but they had no affect. They have a list of doctors all over the world who will treat with this protocol, because, most doctors have been … Today we share the story of Poovanesh and her experience of living with scleroderma. Hi Sara; I am in total remission and AP works for about 80% of people.Those that are not too advanced in the disease recover in a couple of years as a rule.Those with bad internal damage can … Randi shares her journey back to health with the help of Dr. Fredrick Wigley of Johns Hopkins Medicine. And that many times the disease "burns itself out" or goes into remission. They would turn bluish purple and become very numb and uncomfortable. My story begins with my very own self-diagnosis. The disease attacked me aggressively with almost total skin invovement and gastro damage top to bottom. No matter what your connection is to scleroderma, you have a story to tell. We held a golf tournament for 8 years, a basketball tournament for 9 years and we currently hold an annual bull roast to help raise money. 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 was a single 41 year old mom with three children, working full- time as an IT Specialist … First, be very leery of what you read on the internet. This can result in a loss of mobility, and in some extreme cases can affect internal organs. When my fingertips started to feel numb, and I had trouble using them, I knew I had carpal tunnel syndrome. https://www.sclero.org/scleroderma/types/systemic/limited/a-to-z.html I went from tailored clothing to baggy jumpers; lose silk blouses and trouser stockings. 1. Lumpectomy and radiation therapy are common treatments for early-stage breast cancer. Scleroderma is an autoimmune disease which causes hardening of the skin. This progresses to a deteriorating way of injury, debilitation, … TELL ME ABOUT YOURSELF. My doctor at the time told me that I had Hoshimoto’s Disease and to take a medication that was being prescribed. LISTEN UP: Add the new Michigan Medicine News Break to your Alexa-enabled device, or subscribe to our daily audio updates on iTunes, Google Play and … The team is planning to submit the complete case report data for publication in a scientific journal soon. 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. Adverse effects in regular TPE treatment are usually not an issue, Harris told Scleroderma News. “Modern TPE has a very low rate of adverse effects (3%) and even these adverse events were mild. The treatment was performed once a week for four weeks followed by two months of rest, totaling 16 TPE treatments per year (with the exception of one six-month suspension). I was a mess and was feeling mighty sorry for myself. With diffuse scleroderma, the skin changes are typically aggressive in the first few years but then there is sometimes skin softening after … After a year of Lyme treatment I am now in remission … After diagnosis, the patient developed additional symptoms, including severe Raynaud’s, a decline in pulmonary function, cardiac arrhythmias, and GERD (gastroesophageal reflux disease) with erosive esophagitis (inflammation and ulceration of the esophageal lining). By the time I was diagnosed I was barely able to keep myself awake for just 8 hours a day, I cried over everything and didn’t know why, and my hair was falling out, yet every time I went to the doctor’s complaining of these symptoms, they essentially told me that it was all in my head and that nothing was wrong with me. Take a closer look at Paige's journey, as she struggled to uncover what was causing her body so much pain and the path she has chosen to take charge in her fight against scleroderma. Use the internet sparingly. In 1996, when the TPE treatment was temporarily suspended, researchers found the disease again progressed, with GERD symptoms reappearing. Even though I am symptom-free, I continue to have a yearly appointment with Dr. Wigley. Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…. Enjoy life and all it has to offer. I’m not going to lie and say that it’s easy. All information contained within the Johns Hopkins Scleroderma website is intended for educational purposes only. There are mild cases and there are life-threatening cases. Scleroderma is the most curable of the incurable diseases! Ana Lucia: Diffuse Scleroderma I am twenty years old and I was diagnosed with diffuse systemic scleroderma a year and a half ago… (Español/Spanish) Ana … I’ll start from the very beginning when Blake was just 22. Amy B: Limited Scleroderma with CREST I am a full time pharmacist in a pediatric hospital. Do what makes you happy; don’t just talk about it – DO IT! Eureka's Story See how Eureka has dealt with her scleroderma … And that many times the disease "burns itself out" or goes into remission. Learn about Paige and Caitlyn's mother­-daughter experience with scleroderma and how they push each other to keep doing the things they love and live … I massaged my fingers, hands and lower arms and then did exercises prescribed by a physical therapist. During this period, I worked at the corporate headquarters of a Fortune 10 company and took great pride in my appearance. Normally, the immune system helps defend the body against disease and infection. Yolima: Diffuse Scleroderma After four years, my diffuse scleroderma has gone into remission. Climbing the stairs in my three-story town house was difficult. Anything that rubbed against my skin made me cringe. However, in spite of all that, things are looking up for me. 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. Fortunately, I was lucky when it came to getting a diagnosis for this disease. I was diagnosed with systemic diffuse scleroderma in 1993. Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. I am experiencing premature ovarian failure at the age of 29, as a side effect of the treatment, so conceiving a child will be difficult for me. Amanda’s Story Amanda was 39 years old when she was diagnosed with scleroderma in 2007. Dotty: Scleroderma, Sjögren's, Parotid Lymphoma I just know there is a wonderful future for me. CDC records highest-ever drug deaths in a 12-month period. Faces of Scleroderma. The thing that matters most is that you can prove it yourself! Since I was always so athletic and full of energy, I could not understand it when all of a sudden I was tired, … I began getting up for work at 3:30 am. • Scleroderma can be a very serious disease with life threatening internal organ … This includes proper diet, balanced rest and exercise, and control of … Linear Scleroderma Patient and Caregiver Stories. I couldn’t ask for a better doctor or better coach. Hi Sara; I am in total remission and AP works for about 80% of people.Those that are not too advanced in the disease recover in a couple of years as a rule.Those with bad internal damage can get fairly well.My girlfriend who used to post here had lung and heart problems.She did the regular AP for 2 years and then went onto MP.Her heart is now just fine and her lungs are … After four years, the patient no longer experienced cardiac arrhythmias. This disease or its drastic treatment could kill me or I could be hit by a bus. Scleroderma is classified as an autoimmune disease. We are sorry that this post was not useful for you! In 2018, hip-hop artist, actress and producer … Fourth lesson learned: perseverance… do whatever you have to do to ease your discomfort.. 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. You've been told that scleroderma is a permanent condition with no known cause or cure. My name is Macy Phillips, and I am 19 years old. Scleroderma is a chronic disease that can affect both the patient’s physical and mental health. My name is Poovanesh Pather and I’m a single mom, former teacher, and now blogger. ; CREST syndrome is a limited form of scleroderma. Scleroderma is a skin disease of the connective tissue featuring thickened skin that can involve scarring, blood vessel problems, varying degrees of inflammation and pain, and is associated with an overactive immune system. NOTE: Do read the Addendums at the end of this article, especially Addendum II, written in May 2011.. I am ever so grateful to have reached that understanding at such an age. Make sure that you have a doctor that you trust implicitly. Be grateful for all of these gifts – your life, your today and every tomorrow. There was a study being conducted at Johns Hopkins that could possibly put my disease into remission. “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.”. When blood tests were finally done, my TSH level was 12 times what it should have been. Patients with scleroderma can have specific antibodies (ANA, anticentromere, or anti-topoisomerase) in … All of my joints ached all the time. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Scleroderma affects women more often than men. I spent over an hour loosening my hands. Physicians and other health care professionals are encouraged to consult other … Amanda’s Story 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. Today I’m kayaking, lifting weights and walking 5 miles a day. I am reading that many times the first 3-5 years are the most aggressive with Systemic Scleroderma. The Scleroderma Foundation is the national organization for people with scleroderma … Scleroderma.org functions as a sounding board for patients and carers to share their own experiences with the disease. Giving that kind of love and getting it in return are an unparalleled experience. Two years after the start of the treatment, GERD symptoms had completely resolved, Raynaud’s symptoms became very mild, and the patient’s lung function returned to normal levels. 5. Antonietta's Story Thursday, February 20, 2014 By: Jocelyn Bailey Antonietta Chiocchi from Wallkill, NY shares her scleroderma story and proves how a strong support system and being your own advocate are important in getting answers for your health. A new woman has emerged. Yes, scleroderma is a terrible disease, but it’s also a terribly heterogeneous disease meaning that no two cases of scleroderma … There was absolutely nothing positive said, and I was not given any time to ask questions. Scleroderma is a chronic disease that can affect both the patient’s physical and mental health. By this time, using my hands had become extremely difficult. I plan a post … I have had Scleroderma since 8 years and since 5 years, it just went into complete remission. 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. Then it was time to walk on the treadmill to get my legs going. In the fall of 2004, there seemed to be a light at the end of the tunnel. I clawed at myself, sometimes drawing blood. Click here to subscribe to the Scleroderma News Newsletter! I found that in Dr. Wigley, when I first visited the Scleroderma Center. Queen Latifah lost her mother, Rita Owens, to an autoimmune disease called scleroderma in 2018. I dare anyone to find a better place to be treated than at the Johns Hopkins Scleroderma Center. Having this disease has completely changed my life. In patients with scleroderma, the immune system triggers other cells to produce too much collagen (a protein). 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. Autoimmune diseases, in general, affect women disproportionately. There is no cause for which I am more passionate, and no team more committed than Dr. Wigley and his staff at Johns Hopkins. 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. 136 were here. I got more and more depressed and really thought my life was over. I was unable to get down on the ground to play with my niece, I couldn’t walk long distances at all, I was fatigued all of the time, and just the idea of having to walk the flight of stairs to my office at work some days made me cry. The case report presents a male patient with CREST syndrome, diagnosed in early 1990 at age 43. My journey began in the winter of 2004. The favorite part of my day was coming home and ripping off my clothes. With diffuse scleroderma, the skin changes are typically aggressive in the first few years but then there is sometimes skin softening after a couple of years. I was referred to Johns Hopkins to see Dr. Wigley and started receiving excellent care from an excellent doctor. At first I was sceptical about this treatment working but it has. Published in … People diagnosed with scleroderma have a higher risk of several types of cancer. In February or March of this year, I began to be very intolerable of the cold… Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in… Christene: Limited Scleroderma I was … Scleroderma Remission You need not take the experience of hundreds of doctors that have cared for thousands of people. I’m not 100% back to my “old self” again, nor will I likely ever be. I would spend days at home in bed because getting up hurt so badly or because I was unable to get dressed on my own or walk up or down my stairs, let alone drive my car to work. I quick Google search of scleroderma will inevitably present you with a horror show of images and stories from sufferers of this condition. Upon my first visit with the new doctor, I was informed that had the previous doctor waited any longer to do blood tests and diagnose my disease, I would likely have been in a coma in less than a week. Dec 21, 2020. While we look forward to bringing you more news in 2018, we would like to sum up 2017 by bringing you the Top 10 most-read scleroderma stories, reminding you, our readers, of what mattered most in the past year. The "remission" you are reading about is not remission. We tried another medication to no avail as well. She told me nothing about the disease; I had to do my own research to find any information. Limited Scleroderma Patient & Caregiver Stories. Live your life with no regrets, learn from your mistakes, and don’t ever wish change a thing or wish to have done anything differently. Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…. The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The authors concluded that TPE could be considered a treatment option for patients with limited scleroderma, and suggested that continuous treatment may be crucial to maintaining disease remission. I then sought new care. Stories Queen Latifah's family story FAQs Expressing yourself Cancel. My first lesson learned was to leave a medical diagnosis up to those who know. Learn about Paige and Caitlyn's mother­-daughter experience with scleroderma and how they push each other to keep doing the things they love and live their lives to the fullest. I kept at it day after day after day and continued to take my prescribed medication Over time, the skin tightening began to subside, the itching lessened and my legs became stronger. I bought the braces to support my hands and went on with my daily activities. 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). I love to write (I actually have a blog), scrapbook, and journal. Enjoy your friends and family (even the annoying ones), sightsee, and look at nature. I was convinced without a doubt my life would be cut short, and the time I had left would be miserable. It’s been nearly 25 years since I received my Scleroderma diagnosis, and I’m happy to say I’m symptom-free If anyone had told me then, I’d be where I am today, I would have told them they were out of their minds. Would love to hear positive stories. There are no known immunosuppressant problems with regular TPE at the frequency used in this case study (16 times a year). On her own blog, ThePaleoMom.com, Sarah Ballantyne says this about how autoimmune diseases develop and how to put them into remission (Ballantyne, 2014a): Autoimmune disease is … Breast cancer is the most common type of cancer diagnosed in people with scleroderma. Alicia B: Localized Morphea … Everything that has happened happens for a reason, it gets you to where you are today.Love with every ounce of your soul, if you give that kind of love, someone, somewhere will want give it back to you. Scleroderma.org functions as a sounding board for patients and carers to share their own experiences with the disease. Very fortunate for me, I remain symptom-free and live pretty much the same as I did before I had ever heard of Scleroderma. She had been under Dr. Wigley’s care through the duration of her treatment. Personal stories - scleroderma. Mary-Charlotte: Juvenile Linear Scleroderma I am now fourteen years old, and I have been in remission for about six years. For the next several weeks, I spent a lot of time on the internet reading everything I possibly could about Scleroderma. I have never seen an explanation for this but recently found a research paper that may explain this. No votes so far! Yes, scleroderma is a terrible disease, but it’s also a terribly heterogeneous disease meaning that no two cases of scleroderma are the same. As this is a ‘study treatment’ and not commonly used, most insurances won’t cover it because it is an experimental treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. I’m 58 years old. Find a doctor who questions, listens, lets you question, explains, suggests and supports. 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. CREST syndrome belongs to the heterogeneous group of sclerodermas, rare autoimmune diseases that affect the skin and potentially also several organs. The study, recently presented at the AABB Annual Meeting in California, is entitled “Benefit of Long-Term Therapeutic Plasma Exchange Treatment in a Patient with CREST Syndrome (Limited Systemic Scleroderma): A 21-Year Success Story,” and its abstract was published in the journal Transfusion. I trust Dr. Wigley with my life. Blake's Scleroderma Journey. Copyright © 2013-2021 All rights reserved. For about fifteen minutes, the doctor inundated me with information. Paige's Story. Hi -AP can get you all better –I had a real bad case of scleroderma with many many problems –it took a few years but every problem went away —I worked with a doctor up at Harvard who used the antibiotic as well as my locaLinternist to manage the many symptoms such as Raynauds -reflux etc -with other meds —I am now in remission … To me, that is one of the biggest keys to living with Scleroderma, having the right group of doctors, loved ones, and friends on your team, in your corner, coaching and cheering you along the way. Second, find a doctor who really cares about you. Although I loved a hot shower, I had to give it up for a cool one. Itching seemed unbearable. Scleroderma is a chronic but rare autoimmune disease in which normal tissue is replaced with thick tissue with extra collagen. Scleroderma, a disfiguring autoimmune disorder that affects the skin, struck Randi Pupkin in 2013 and brought her world to a standstill. Data from two clinical trials … The patient started treatment in 1993 through regular therapeutic plasma exchange (TPE, also referred to as plasmapheresis), an extracorporeal technique in which potential blood-circulating harmful factors, like antibodies, are removed from the  blood. 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. After just a few months, it seems to have worked and the disease appears to, once again, be in remission. I have no skin involvement, an arrhythmia from two years ago for which I was implanted with an ICD and placed on beta blockers. In this collection of stories, real patients and carers share their experiences with scleroderma.