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eLetter #868 | June 5, 2020  

Erion Moore

Erion Moore II, Dx 2008

Know the Face of Scleroderma

Erion Moore II, Diagnosed 2008

During June, to celebrate Scleroderma Awareness Month, the eLetter will feature individuals whose lives were changed by scleroderma.

Like most individuals with scleroderma, Erion Moore had the disease long before he was diagnosed. But in his case, it took two years to confirm the condition.

You see, in 2006, Erion was a college athlete who started struggling on and off the court. Suddenly, he couldn’t palm a basketball. His shooting form was worsening. He was feeling constantly fatigued, and his endurance just wasn’t what it used to be.

All of the above led to doctors identifying rheumatoid arthritis, but they wouldn’t see scleroderma until 2008, when Erion turned 25.

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National Day of Action logo

Speak Up for Scleroderma on Monday, June 29

Register now for our National Day of Action and join thousands of others across the country to ask members of Congress to support bills important to the scleroderma community. Join a 45-minute training video on June 22 (or watch it later), and you are ready. There’s no cost to participate. The bills important to the scleroderma community are budget neutral and have both Republican and Democrat support. As one advocate has said, adding your voice to this effort isn’t political, it’s personal. Register today and share the link with your friends and family.

REGISTER

 Pulse Oximetry American Thoracic Society

Pulse Oximetry

From the American Thoracic Society

Pulse oximetry is a way to measure how much oxygen your blood is carrying. By using a small device called a pulse oximeter, your blood oxygen level can be checked without needing to be stuck with a needle. The blood oxygen level measured with an oximeter is called your oxygen saturation level (abbreviated O2sat or SaO2). This is a percentage of how much oxygen your blood is carrying compared to the maximum it is capable of carrying. Normally, more than 89% of your red blood should be carrying oxygen

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ATS PAR Check Up Webinar COVID-19

ATS PAR Check Up

COVID-19 Edition PH & Sleep Apnea

Watch a video of the American Thoracic Society, Patient Advisory Roundtable Check Up, Conversations with Lund Disease Patients, COVID-19 Edition.

WATCH

Tracy Frech MD MS Headshot

Uncovering Gastrointestinal Involvemente in Systemic Sclerosis

Healio News, May 26, 2000

Tracy Frech, M.D., M.S., Director of the Systemic Sclerosis Clinic at the University of Utah Hospital, was quoted in a Healio Rheumatology article, written by Robert Stott, regarding gastrointestinal involvement in systemic sclerosis.

Dr. Frech said, “It is the most common involved internal organ in systemic sclerosis, and can be the presenting feature in 10% of our patients. During the course of an illness, 95% of systemic sclerosis patients will complain of gastrointestinal symptoms. Additionally, 6% to 12% of our patients will die from gastrointestinal tract involvement.

READ

Virtual Stepping Out eLetter

Vermont Stepping Out Hills Path

stepping out two women walking

Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down. This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut.

June Fundraising Events:

STEPPING OUT 

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

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

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 updated on May 1. Please check it from time to time for additional updates.

COVID‑19

Clinical Trial Opportunities

Phase 2a Study of EHP-101

Emerald Health Pharmaceuticals logoEmerald Health Pharmaceuticals Inc. (EHP), a clinical-stage biotechnology company developing a new class of medicines to treat diseases with unmet medical needs, continues to advance its Phase 2a clinical study of EHP-101, an oral formulation of a patented new chemical entity derived from cannabidiol (CBD) being developed for the treatment of systemic sclerosis (SSc), a severe, debilitating and life-threatening form of scleroderma, and multiple sclerosis (MS).

PRESS RELEASE

 
 
 
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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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