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Scleroderma Foundation
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eLetter #899 | January 8, 2021  
COVID-19 Molecule Coronavirus

COVID-19 Vaccines & Scleroderma

The Scleroderma Foundation's Medical & Scientific Advisory Board has issued guidance on the COVID-19 vaccines, to be used in consultation with your rheumatologist or other health care provider.

These guidelines and more information about COVID-19 are posted on the Foundation's website.

READ

COVID-19 Vaccine in Autoimmune Disease Aggarwal 1

COVID Vaccine Autoimmune Aggarwal 2

COVID-19 Vaccines & Autoimmune Disease

Watch a two-part video presentation by Rohit Aggarwal, M.D., M.S., University of Pittsburgh Medical Center, on the COVID-19 vaccines in autoimmune diseases or in individuals who are treated with immunosuppressive medication. In part one, Dr. Aggarwal discusses the new vaccines and their effectiveness and safety data in general. In part two, he discusses 10 specific questions and concerns about autoimmune disease and immunosuppressive medications.

WATCH PART I

WATCH PART II

Varga CD38 study U Mich Northwestern

iScience logo

Fibrosis: A Paradigm-Shifting Observation

Targeting CD38-dependent NAD+ metabolism to mitigate multiple organ fibrosis

A multi-disciplinary research team from the University of Michigan, the Mayo Clinic, and Northwestern University has published findings in iScience that shows that the CD38 enzyme is abnormally elevated in skin and lung biopsies of scleroderma patients, which may explain the fibrosis and the failure of resolution over time. These findings are very novel and of great interest because:

  1. They are the first study uncovering a novel metabolic pathway underlying scleroderma.
  2. They reveal important similarities between aging and scleroderma—a novel concept in this disease.
  3. They identify novel ways to treat the disease, including dietary supplementation (NAD supplements).

We hope to gain wide visibility for this paradigm-shifting observation with clinical implications.

READ

African American Male Patient White Female Doctor

Racial Disparities in Systemic Sclerosis

A large team of clinical researchers, including several closely aligned with the Scleroderma Foundation, published an article regarding their findings about observed racial disparities for African Americans who have SSc-ILD. The team determined that when African Americans with SSc-ILD are treated early and aggressively with upfront immunosuppressive therapy, they have similar rates of ILD progression and long‐term morbidity and mortality outcome, as non‐African Americans with SSc‐ILD.

The team stated that “these findings should motivate us to help ensure that our African American patients with SSc have the same follow up and treatment opportunities as our non‐African American patients with SSc."

Additional studies are needed to determine whether African American patients with SSc demonstrate preferential treatment responses to certain agents to ultimately help personalize their care and improve health outcomes.

READ

isolation emotional health support senior man cat

Addressing Mental Health

You can play an important part in addressing the mental health needs of the scleroderma community by completing a brief survey (seven minutes) created in partnership with the Foundation's Michigan Chapter and the Ginsberg Center at the University of Michigan.

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

SURVEY

NORD Rare Care

Rare Caregiver Respite Program

The National Organization of Rare Disorders (NORD) offers the Respite Program to provide financial assistance to give a caregiver time to attend a conference or event, or to simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.

This first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder.

To apply, contact NORD at (203) 616-4328 or email CaregiverRespite@rarediseases.org.

READ

Zoom virtual support group lap top

Virtual Support Groups

Stay connected with others who have scleroderma. The pandemic might keep you at home, but it doesn't have to keep you apart from others.

Most scleroderma support groups converted to virtual meetings months ago. Find a list of all support groups on the Foundation's website.

SUPPORT

SF Logo Standard JPG

 

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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