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The Day I Met the Man Who Saved My Life

The thing about coming down with scleroderma, unlike most other diseases, is that no two patients’ stories are alike. This makes scleroderma notoriously hard to diagnose. Many general practitioners, and even some rheumatologists, have limited experience with it and may be unsure how to advise. Without a single definitive blood test, both patients and physicians can stumble around in confusion before a convergence of symptoms makes the diagnosis undeniable. What that means: For most people, developing symptoms of scleroderma is one of the strangest and most alienating things that has ever happened to them. For me, when my symptoms first appeared, I felt like I was caught in Kafka’s The Metamorphosis,…

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 New study flags existing medications as possible scleroderma treatments

Through an analysis of genetic data, scientists have identified dozens of existing medications that could potentially be repurposed as treatments for scleroderma, according to a new study. Potential treatments identified in the analysis include therapies that modulate the activity of estrogen, a female sex hormone, as well as medicines that act on inflammatory pathways or neurotransmitters — signaling molecules that nerve cells use to communicate with each other and the rest of the body.

Articles of Interest

Four Things To Know About Scleroderma

Scleroderma, or systemic sclerosis, is an autoimmune disease in which the body attacks its own healthy connective tissues, potentially affecting the skin, blood vessels, muscles, or internal organs. Scleroderma can be difficult to diagnose because many other autoimmune diseases have similar symptoms.

New discoveries open new possibilities in scleroderma treatment

Basic discoveries about scleroderma are starting to open pathways leading to novel treatments, starting with the approval of nintedanib for the treatment of scleroderma associated interstitial lung disease earlier in 2019. Systemic sclerosis is a complex disease involving immune activation, vascular complications, and tissue fibrosis in the skin, lungs, and elsewhere. Recent work has been done in the genetics and epigenetics of scleroderma and identifying new pathways that offer promising targets. Some of those pathways are similar to pathogenic pathways seen in certain cancers for which targeted therapies are already approved or in clinical development.02

New Treatments Offer Hope in the Fight Against a Cruel Skin-Hardening Ailment

Scleroderma means "hard skin," a hallmark of the illness that can turn hands purple as if from frostbite and can curl fingers into woodlike nonfunctioning. Rare and enigmatic, it is a chronic, often progressive rheumatic disease in which the immune system overproduces collagen, which can stiffen and thicken the skin, typically on the hands, arms, legs and face.

Scleroderma: Avoid excessive sunlight, cold exposure

Scleroderma is commoner in female than male and common among people between the age group of 35 to 55 years, but this does not say that it cannot affect any age group.“No single treatment for all patients; treatment is usually based on symptoms or organ affected. However some treatments such as skin softening cream drug for the skin itching and dryness, medications, drugs for raynaud’s, drugs for lung diseases and pulmonary hypertension, among others.

The Green Monster - Disease Envy

Scleroderma is rare, progressive, and incurable. It’s slowly taking my lungs, my voice, my laugh, and my mobility. There’s no magic pill or quick fix, only careful management to slow the rate of devastation down. Some days, that reality makes me wish for a different battle, one I could win. These thoughts aren’t pretty, but neither is chronic illness. And I’ve come to realize that having them doesn’t make me a bad person, just a human one. We’re taught to be brave patients, to find silver linings, to never succumb to envy or resentment. Silencing feelings, however, is a heavy burden to lay on an already overburdened body.

What is known about the nature, cause and possible treatment of the disease scleroderma?

The fundamental cause of scleroderma is unknown at the present time, but medical researchers are making strides in diagnosing and treating it. There are three main components of the disease: vascular, fibrotic, and autoimmune.

‘I feel like I’ve been left to die in a desert’: Man recounts painful history with scleroderma

"As many people have scleroderma as they do MS, lupus and other diseases of that nature, but nobody knows what it is because it's not the 'sexy' illness," Goldstein told the Daily News. "People don't even like to look at us."

Resources

Scleroderma News

Scleroderma News is committed to publishing the latest news and information about Scleroderma in a format that those with the disease as well as their families can understand. Our staff of writers include professional journalists and researchers alike who source and publish news articles daily.

Project Scleroderma

Project Scleroderma’s primary mission is to raise the global level of Scleroderma awareness and to encourage support of Scleroderma research. The organization’s goal is to help give Scleroderma patients a platform to voice their stories and an opportunity to champion for their cause.

Sclero.org

SCLERO.ORG is operated by the International Scleroderma Network, which is a full-service U.S. nonprofit 501(c)(3) established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.

Scleroderma Angel Foundation

The Scleroderma Angel Foundation is a group of patients, loved ones, concerned citizens and providers dedicated to the goal of increased awareness of Scleroderma and related disorders. The aim is to promote awareness through education, and public discourse with an attitude of conviction and purpose that is essential to dealing with these extremely difficult disorders.

Scleroderma Aware

HARD WORD. HARDER DISEASE. We’ll make it easier for you. Help us make it easier for them.

Scleroderma Canada

The Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives.

Scleroderma Clinical Trials Consortium

The Scleroderma Clinical Trials Consortium (SCTC) is a charitable non-profit organization dedicated to finding better treatment for scleroderma. Member institutions of the SCTC conduct clinical treatment trials of new (and sometimes old) medications that appear promising for the treatment of scleroderma.

Scleroderma Foundation

The Scleroderma Foundation has been fighting to spread awareness and help educate the public about this devastating disease for more than 15 years. Please join the fight and stand alongside us for June's Scleroderma Awareness Month. Help us put an end to "sclero-what?"

Scleroderma Research Foundation

SRF was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we’ve stood firm in our belief that the best way to help scleroderma patients is to fund the most promising medical research aimed at improved therapies and a cure. The SRF is America's largest nonprofit investor in scleroderma research.

Scleroderma Trial

SCOT is a clinical research study designed for people with severe forms of scleroderma. SCOT stands for Scleroderma: Cyclophosphamide Or Transplantation. The SCOT study will compare the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma.

Steffens Scleroderma Foundation

Named in memory of Ann Elizabeth Steffens, a scleroderma patient who had an unparalleled desire to make a difference, the foundation was made possible by a generous gift from her mother, Helen Polenz. We proudly carry on Ann’s spirit of helping others and one day hope to spare families from losing a loved one to these diseases.

American College of Rheumatology

Scleroderma (also known as systemic sclerosis) is a chronic disease that causes the skin to become thick and hard; a buildup of scar tissue; and damage to internal organs such as the heart and blood vessels, lungs, stomach and kidneys. The effects of scleroderma vary widely and range from minor to life-threatening, depending on how widespread the disease is and which parts of the body are affected.

Chronic Brevity: Living with Scleroderma

I live with multiple auto-immune diseases including: Scleroderma, Lupus, and Hypothyroidism. If you want to learn more, read my blog...duh!

Federation of European Scleroderma Associations

Welcome! We are FESCA – Federation of European Scleroderma Associations aisbl; an umbrella group of scleroderma patient support-and-advocacy organisations working to increase awareness, and advocate for equitable treatments for people with scleroderma throughout Europe.

Food Fight for Scleroderma

All net proceeds from Food Fight will be donated to the Scleroderma Foundation to support its three-fold mission of SUPPORT, EDUCATION and RESEARCH.

Juvenile Scleroderma Network

Our mission is to provide emotional support and educational information to parents and their children living with juvenile scleroderma; to support pediatric research to identify the cause and the cure for juvenile scleroderma; to enhance the public's awareness of juvenile scleroderma and related diseases.

Living with Scleroderma

I started this blog to document the whirlwind of events that we’ve been going through ever since my diagnosis. It’s not easy being sick, but with the love and support of the people around me, it makes me more hopeful… that everything will turn out ok!

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Scleroderma is more common in women than men. Anyone can get it, even children. Most localized types show up before age 40, and are more common in people of European descent than in African Americans. Systemic types are more common in people aged 30 to 50 and are more common in African Americans than in people of European descent.

Scleroderma Blog

So if you're looking for information on scleroderma, and you are using the Internet as your source, please take anything you find with a grain of salt, even if you seem the same info on multiple medical sites.

Johns Hopkins Scleroderma Center

While the doctors at The Johns Hopkins Scleroderma Center search for a cure for scleroderma, they are successfully treating the disease manifestations and reducing the suffering caused by scleroderma. They also educate patients and their families about scleroderma and what is the best treatment approach.

MayoClinic

Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

MedicineNet

Scleroderma is an autoimmune disease of the connective tissue characterized by skin thickening, spontaneous scarring, blood vessel disease, and varying degrees of inflammation, associated with an overactive immune system.

MedlinePlus

No one knows what causes scleroderma. It is more common in women. It can be mild or severe. Doctors diagnose scleroderma using your medical history, a physical exam, lab tests, and a skin biopsy. There is no cure, but various treatments can control symptoms and complications.

StatPearls

Scleroderma is a connective tissue disorder characterized primarily by the thickening and hardening of the skin. The combining form “sclero” means "hard" in Greek, and the word “dermis” means skin.