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Scleroderma Foundation
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eLetter #887 | October 16, 2020  

Scleroderma Virtual University Fall Series

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Lee Shapiro, M.D.

Coping with Both a Pandemic and Scleroderma
Scleroderma Virtual University Webinar
October 21, 4 - 5 p.m. Eastern (Please note later start time)
(3 Central, 2 Mountain, 1 Pacific)

With Lee Shapiro, M.D., Scleroderma Center at Albany Medical College and Steffens Scleroderma Foundation

The Scleroderma Virtual University fall patient education series continues with a discussion about the impact of the pandemic on people with scleroderma. What is the impact of COVID-19 on your health and healthcare? What adjustments can you make? 

Dr. Lee Shapiro is professor of medicine and director of the Scleroderma Center at Albany Medical College. He also serves as chief medical officer of the Steffens Scleroderma Foundation and has been on the medical advisory board of the Scleroderma Foundation Tri-State Chapter for 30 years.

REGISTER

Amy Gietzen fall 2020

VIDEO: Connecting as a Young Adult with Scleroderma

Watch the video recording of "Connecting as a Young Adult with Scleroderma," a panel discussion originally presented October 14 moderated by Amy Gietzen, Patient Advocate, Dx 2001. (Part of the Scleroderma Virtual University patient education fall series.)

WATCH

Journal of Psychosomatic Research cover image

Changes in Mental Health Symptoms During COVID-19 Pandemic

The Scleroderma Patient-centered Intervention Network (SPIN) conducted a study to understand the changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries. Prior to SPIN's initiative, no studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations. Their objective was to compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes. SPIN concluded that anxiety symptoms, but not depression symptoms, increased dramatically during COVID-19 among people with a pre-existing medical conditions.

READ

Healio Rheumatology

Multidisciplinary Approach Strongly Encouraged in Systemic Sclerosis

Elizabeth Volkmann, M.D., M.S., director of the UCLA Scleroderma Program, was quoted by Healio Rheumatology in an October 12 article reporting on her presentation at the 2020 Congress of Clinical Rheumatology-West.

READ

 PEDRA Annual Conference 2020

PeDRA Annual Conference

2020 Virtual Event, October 22-23

Due to uncertainty of the ongoing COVID-19 pandemic and commitment to the health, safety, and comfort of all attendees, PeDRA leadership has made decision to conduct the 2020 Annual Conference virtually. Join us October 22-23 from the comfort of your home or office for the first-ever virtual PeDRA Annual Conference. Conference organizers remain committed to hosting an event to learn, share, and advance research that improves the lives of children and families facing the burden of pediatric skin diseases. The virtual format will not stop them.

REGISTER

Virtual Stepping Out eLetter

Keeping Our Promise While Staying Safe

You can help the Scleroderma Foundation keep the promise it made to everyone affected by scleroderma to provide the best emotional support, educational programs, and peer-reviewed research.

We can't miss a step because everyone is counting on us, but we need your help. Stay safe at home and fundraise virtually with effective online fundraising tools. Sign up today for a virtual fundraising event.

10/31 Boston, Massachusetts

STEPPING OUT

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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

myPHteam difficulty breathing

Working from Home with Ticket to Work

"Does anyone else get extremely short of breath & experience pain when you bend over?" Read what other people who have pulmonary hypertension are sharing about this topic.

myPHteam

Ticket to Work - WISE

Working from Home with Ticket to Work

WEBINAR: Wednesday, October 21, 3 - 4:30 p.m. ET

Want to work from home? A Ticket to Work service provider can help with that!

Join ChooseWork on October 21 at 3 p.m. Eastern Time to learn how Social Security’s Ticket to Work Program can support you on your path to employment.

WEBINAR

Clinical Trial Opportunity

The AURORA Study logo

The AURORA Study

Are you living with systemic sclerosis and experiencing painful Raynaud's phenomenon attacks?

The main purpose of the AURORA Study is to evaluate the safety and effectiveness of the investigational study drug, iloprost, compared to placebo (which has no active ingredients) in decreasing the frequency and symptoms (pain, numbness, tingling, and discomfort) of symptomatic Raynaud’s phenomenon (RP) attacks in people with systemic sclerosis (SSc).  

Conducted by Eicos Sciences, the following are eligibility requirements to participate.

  • At least 18 years old
  • Have a diagnosis of SSc
  • Experiencing frequent symptomatic pain, numbness, tingling, and/or discomfort from Raynaud attacks.
Learn more about the study and how to participate by clicking the link below.

AURORA

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Kadmon Trial 2020 kadmonscleroderma.com
 
 
 
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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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