For Patients

If you have scleroderma, you are not alone. The scleroderma community is made up of tens of thousands of patients and their loved ones worldwide. The SRF is here to help.

The first time many people hear about scleroderma is when they, a family member or friend are diagnosed with the disease. Scleroderma is a complex and surprisingly widespread illness, affecting as many people as more commonly recognized diseases such as multiple sclerosis and muscular dystrophy.

In addition to funding the most promising research aimed at improved therapies and a cure, the Scleroderma Research Foundation provides information that may help scleroderma patients better understand their disorder and more effectively manage its symptoms.

To learn more about the various forms and subtypes of scleroderma, please click here. This section of the Scleroderma Research Foundation’s Web site provides information for patients to educate themselves, as well as their caretakers and loved ones, about this serious disease.

Please remember, information provided on this Website and others is intended as a guide. Specific medical advice can only be provided by your health care professional.


Research News

Integrated long non-coding RNA analyses identify novel regulators of epithelial-mesenchymal transition in the mouse model of pulmonary fibrosis

Author: Hao Sun, Junjie Chen, Wenyi Qian, Jiang Kang, Jun Wang, Lei Jiang, Li Qiao, Wei Chen and Jinsong Zhang
Date Published: January-2016
Source: Journal of Cellular and Molecular Medicine

Idiopathic pulmonary fibrosis (IPF) is a chronic fatal lung disease characterized by aberrant accumulation of fibroblast population and deposition of extra cellular matrix. Increasing evidence support that epithelial-mesenchymal transition (EMT) of alveolar epithelial cells is a critical process in the pathogenesis of IPF. Although delivery of bleomycin to induce acute lung injury is the most well-studied animal model of pulmonary fibrosis, there is considerable interest to pursue other models to understand the common and/or specific pathological mechanisms. In this study, we established a mouse model of pulmonary injury and progressive interstitial fibrosis via intraperitoneal injection of paraquat, a widely used herbicide known to cause pulmonary fibrosis in human.

CD4+ Group 1 Innate Lymphoid Cells (ILC) Form a Functionally Distinct ILC Subset That Is Increased in Systemic Sclerosis

Author: Florence Roan, Thomas A. Stoklasek, Elizabeth Whalen, Jerry A. Molitor, Jeffrey A. Bluestone, Jane H. Buckner and Steven F. Ziegler
Date Published: January-2016
Source: The Journal of Immunology

Innate lymphoid cells (ILC) are a heterogeneous group of cellular subsets that produce large amounts of T cell–associated cytokines in response to innate stimulation in the absence of Ag. In this study, we define distinct patterns of surface marker and cytokine expression among the ILC subsets that may further delineate their migration and function. Most notably, we found that the subset previously defined as group 1 ILC (ILC1) contains CD4+ CD8−, CD4− CD8+, and CD4− CD8− populations.

Treprostinil iontophoresis improves digital blood flow during local cooling in systemic sclerosis

Author: Florence Gaillard-Bigot, Matthieu Roustit, Sophie Blaise, et al
Date Published: January-2016
Source: Microcirculation

Severe Raynaud's syndrome and digital ulcers are the most prevalent manifestations of systemic sclerosis (SSc) peripheral microvascular disease. We tested whether treprostinil iontophoresis on the finger pad of patients with SSc would improve digital blood flow during hand cooling.

The crowded crossroad to angiogenesis in systemic sclerosis: where is the key to the problem?

Author: Mirko Manetti, Serena Guiducci and Marco Matucci-Cerinic
Date Published: January-2016
Source: Arthritis Research & Therapy

Dysregulated expression of several proangiogenic and antiangiogenic factors has been implicated in the dysfunction of angiogenesis in systemic sclerosis (SSc). Into this complex scenario comes the study recently published in Arthritis Research & Therapy by Hirigoyen et al. [1], who report new data implicating an inhibitory splice variant of vascular endothelial growth factor (VEGF)-A, namely VEGF165b, in the inhibition of angiogenesis by platelets in SSc. These findings are part of an intriguing chain of data as several studies have shown that VEGF-A, one of the most potent promoters of angiogenesis, is markedly increased in SSc skin and circulation despite clear evidence of an insufficient angiogenic response [2, 3].

Telling Jewels From Junk in DNA

Author: Carl Zimmer
Date Published: January-2016
Source: New York Times

When you learned about genes in high school, chances are it went something like this: Our DNA holds about 20,000 protein-coding genes. To make a protein, a cell makes a copy of the corresponding gene, in the form of a single-stranded molecule called RNA. The cell uses the RNA molecule as a template to make the protein. And then the protein floats off to do its job. That’s certainly true. But there’s more to the story.

News for Patients

My Hands and Feet Are Always Cold — Should I Worry?

Author: Heart & Vascular Team
Date Published: February-2016
Source: Cleveland Clinic

It’s a familiar scene. You turn up the thermostat; your partner turns it down. Some people struggle with feeling cold all the time — especially when it comes to their hands and feet. If you feel like your extremities are often cold, you may wonder when you should see a doctor. Here’s what you need to know. When blood vessels constrict “Cold hands and feet are a common complaint,” says vascular specialist Natalie Evans, MD. “But generally, when this happens in young healthy people, it isn’t anything to worry about.”

Anti-IFI16 Antibodies in Scleroderma - Studying associations with digital gangrene

Date Published: January-2016
Source: Rheumatology News

Anti-interferon inducible protein 16 (Anti-IFI16) antibodies are associated with digital gangrene in scleroderma. This according to a study of sera from 94 patients with scleroderma and 47 healthy controls and a separate case-control study of 39 patients with scleroderma and digital gangrene and 39 patients with scleroderma and Raynaud’s alone. Researchers found:

Colonic Microbial Signatures in Systemic Sclerosis How do they affect clinical manifestations?

Date Published: January-2016
Source: Rheumatology News

Compared with healthy controls, patients with systemic sclerosis (SSc) harbor a distinct colonic microbial signature that may perpetuate immunological aberrations and contribute to clinical manifestations of SSc. This according to a study of 17 patients with SSc and 17 age- and sex-matched healthy controls. Researchers found:

Scleroderma related interstitial lung disease can be treated with new promising treatment

Date Published: January-2016
Source: Bel Marra Health

Scleroderma related interstitial lung disease can be treated with new promising treatment. Interstitial lung disease is common in systemic sclerosis and is the leading cause of death. If discovered early on, though, prognosis is positive for patients. Interstitial lung disease is a term to describe a large group of disorders which refers to the scarring of lung tissue and supporting of the air sacs. This scarring can contribute to lung stiffness which affects a person’s ability to breathe which limits oxygen from entering the bloodstream.

Genetic factors and systemic sclerosis

Author: Giuseppe Murdacaa, Miriam Contatorea, Rossella Gullib, Paola Mandichb, Francesco Puppoa
Date Published: January-2016
Source: Autoimmunity Reviews

Systemic sclerosis (SSc) is a rare connective tissue disease of unknown etiology characterized by chronic inflammation and fibrosis of the skin, vascular abnormalities, and variable involvement of organs including kidneys, gastrointestinal tract, heart, and lungs. SSc shows a complex etiology in which both environmental and genetic factors seem to influence the onset and outcome of the disease. We provide an extensive overview of the genetic factors and epigenetic modifications and what their knowledge has revealed in terms of etiopathogenesis of SSc.

Ways to Give

There are many ways that you can support the work of the Scleroderma Research Foundation. We are grateful for your commitment to helping the SRF fund research that will result in improved therapies and, ultimately, a cure.

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