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eLetter #898 | January 2, 2021  
New Year 2021

Happy New Year!

Feliz Año Nuevo
Bonne Année
Gelukkig Nieuwjaar
Frohes Neues Jahr
Eftychisméno To Néo Étos
Hauʻoli Makahiki Hou
Xīnnián Kuàilè
Navavarsh Kee Shubhakaamana
Athbhliain Faoi Mhaise Daoibh
Felice Anno Nuovo
Akemashiteomedetōgozaimasu
Shnorhavor Nor Tari

emotional help

University of Michigan Ginsberg Center

How Does the Scleroderma Foundation Address Mental Health?

You can play an important part in answering that question by completing a brief survey (seven minutes) created in partnership with the Foundation's Michigan Chapter and the Ginsburg Center at the University of Michigan.

Your responses are a first step towards creating resources to address the mental health needs of the scleroderma community and to establish partnerships with local providers across the country.

Survey responses are requested by January 15, 2021. Anyone 18 years and older, who has been diagnosed with scleroderma may participate. If you have any questions about the survey, please contact Laura Dyas: LDyas@scleroderma.org.

SURVEY

2020 Voice Winter Cover

Scleroderma Voice Magazine

Scleroderma Voice is the Foundation's quarterly member magazine with updates on the latest scleroderma research and treatments, articles by leading doctors and other health professionals, practical tips about coping with symptoms, and heartwarming stories about individuals affected by scleroderma.

To subscribe, become a member today for $25*. Members also receive $50 off registration to the Foundation's annual National Patient Education Conference.

*$35 U.S. for international members.

Become a member today at scleroderma.org/membership.

TOSS scleroderma self management

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself. Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life.

Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

Raynaud Phenomenon Brochure 2019

Raynaud Phenomenon

Raynaud Phenomenon is the most common early symptom of systemic scleroderma. It is present at one time or another in about 90 percent of individuals with scleroderma. It is most obvious in the fingers and toes but can also involve the ears, nose and tip of the tongue.

Raynaud Phenomenon is not confined to people with scleroderma. It is also seen in people with lupus and rheumatoid arthritis, and other connective tissue diseases. In addition, many healthy people have Raynaud Phenomenon without any other illness. In this situation, it is called Primary Raynaud Disease.

READ

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MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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