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Scleroderma Foundation
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eLetter #737 | November 17, 2017  
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Thanksgiving Holiday Observance

In observance of the Thanksgiving holiday, the Scleroderma Foundation national office will be closed on Thanksgiving Day, November 23, and Friday the 24th of November.  During this time, calls to the info line, 800-722-4673, will go to voice mail.  

scleroderma.org

 YouTube Postlethwaite 2017

Video: Drugs that Cause Scleroderma/Morphea

In this video recorded at the Scleroderma Foundation's 2017 Patient Education Conference, Arnold Postlethwaite, M.D., discusses medications that have been reported to trigger onset of classic systemic sclerosis or localized scleroderma (morphea). Anticancer (chemotherapy) drugs, the largest class, are  discussed as they are of special interest to systemic sclerosis patients. Other types of drugs reported to induce scleroderma such as migraine headaches drugs, vitamin B1 and B12 injections, and oral contraceptive agents are also be discussed.

watch video

Monica Mukherjee, M.D., MPH

Scleroderma Researcher Profile

Monica Mukherjee, M.D., M.P.H., of Johns Hopkins University School of Medicine, received a 2017 research grant from the Scleroderma Foundation to study better methods for detecting and predicting heart disease, such as pulmonary hypertension and right-side heart failure.  If successful, this technique could lead to improved mortality rates.  

"Speckle tracking echocardiography is a noninvasive tool that helps with early detection of scleroderma heart disease," said Dr. Mukherjee.

follow Dr. Mukherjee on Twitter

Maureen Mayes M.D.

Doctor of the Year – Maureen Mayes, M.D., M.P.H.

World-renowned scleroderma researcher and clinician, Maureen D. Mayes, M.D., M.P.H., of the University of Texas Health Science Center at Houston, received the 2017 Doctor of the Year Award from the Scleroderma Foundation in recognition of her tireless work in patient education.  Dr. Mayes is professor of rheumatology and clinical immuno-genetics at the McGovern Medical School and founder and director of its Scleroderma Clinical and Research Program.  She has published over 200 articles and reviews on the genetics of scleroderma and clinical treatment trials.  Many lay members of the scleroderma community know her as the author of the excellent patient resource book entitled, Scleroderma: A Guide for Patients and Families.  

read more

ATS Patient Voices 6, 2017 

ATS Patient Voices 6

Download a copy of Patient Voices 6 from the American Thoracic Society (ATS) Public Advisory Roundtable (PAR).  This publication shares stories from nine patients, with different pulmonary disorders, each of whom presented at the ATS 2017 International Conference.  The introduction was written by the Scleroderma Foundation's Kerri Connolly, who is also chair of the ATS PAR. 

download Patient Voices 6

 ACA Open Enrollment 2018

Open Enrollment Ends Dec. 15 for 2018 Health Insurance Under ACA

If you need health insurance for 2018 via the individual marketplace of the Affordable Care Act, the open enrollment period is now through December 15.  Anyone who doesn't have coverage through a job, Medicare, Medicaid, the Children's Health Insurance Plan (CHIP), or other qualifying coverage is eligible to apply.  Visit the HealthCare.gov website to learn more and sign up.

HealthCare.gov

SSc-PAH vs iPAH 2017 ACR

Key Hemodynamic Differences Noted With Scleroderma-Associated PAH vs Idiopathic PAH

Read this report on a study presented at the recent American College of Rheumatology annual meeting (November 2017) regarding findings that patients with systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH) display important differences compared with patients who have idiopathic PAH (iPAH).  

read more

JoinMe webinar

Grassroots Advocacy Training - Recording

Public policy advocacy on behalf of people affected by  scleroderma at both the state and federal level is crucial to making a difference in their lives.  The Scleroderma Foundation now offers monthly grassroots advocacy training webinars.  Watch the recording of webinar one, "Grassroots Advocacy Overview,"  from October 23, 2017.
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On November 27 at 2 p.m. Eastern log in to https://join.me/scleroderma.org for webinar two: "Preparing and Sharing your Elevator Speech."
 phildelphia Patient Ed save the date 2018 

2018 National Patient Education Conference

Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.

sign up for e-alerts

Giving Tuesday 2017 unselfie

Giving Tuesday is Nov. 28

#GivingTuesday is Nov. 28. Download the #unselfie sign, write your reason for giving to #curescleroderma, take a pic and post on Facebook and Twitter!

download the unselfie

 
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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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