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Scleroderma Foundation
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eLetter #789 | November 23, 2018  

Linda Baum

Linda Baum, O.D.


GIVING TUESDAY: November 27
Reach for the Cure

“My international team of doctors, nurses, and health care providers saved my life,” Linda Baum, O.D.

“Without the skill and bravery of the team who took a chance on me, without the research and data to support the belief in my ability to survive, I would not be here today.”

Dr. Linda Baum was diagnosed in 1994 with systemic sclerosis, which led to a life-threatening case of Interstitial Lung Disease. After being on oxygen for 10 years and facing imminent death, Dr. Baum underwent a double lobar lung transplant in 2012, which was a high-risk, experimental surgery at the time.

On Giving Tuesday, November 27, please give generously as together we reach for the cure

watch the reach for the cure video

YouTube 2018 Mayes FAQs

 

Video:  "Scleroderma FAQ"

At the 2018 National Patient Education Conference, we filmed a presentation by Maureen Mayes, M.D., M.P.H., University of Texas, Houston, discussing the frequently asked questions about scleroderma.  Included in the topic were the different kinds of scleroderma (localized versus diffuse, systemic versus limited systemic forms). Also discussed were the epidemiology of scleroderma in terms of prevelence and incidence, plus research efforts and current and future therapies.

watch this video & others from the 2018 conference

University of Utah Health logo


Research & Treatment Centers

University of Utah Progressive Systemic Sclerosis Clinic

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Utah, go to the University of Utah Progressive Systemic Sclerosis Clinic.

ACA Open Enrollment
 

December 15 Deadline for 2019 Health Insurance Open Enrollment

If you need health insurance for 2019 via the individual marketplace of the Affordable Care Act, the open enrollment period ends 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 HealthCare.gov to learn more and sign up

Join Inspire!
 

"Can my Rheumatologist Diagnose Scleroderma with just a Physical Examination?"

That's a very good question!  The process of diagnosis tends to vary widely for scleroderma.  While there are specific criteria that doctors follow, it can be extremely helpful for someone who is newly diagnosed to hear how others experienced diagnosis.

share your story of diagnosis on Inspire

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

 Scleroderma Lung Study III  

Scleroderma Lung Study III

Combining the Anti-Fibrotic Effects of Pirfenidone (PFD) with Mycophenolate (MMF) for Treating Scleroderma-Related Interstitial Lung Disease

Scleroderma Lung Study III (SLS III) is focused on the treatment of pulmonary fibrosis and is being conducted at 17 different centers throughout United States. To participate, patients must meet the following criteria:

  • Be at least 18 years old 
  • Have systemic scleroderma such as limited (previously called CREST syndrome) or diffuse scleroderma 
  • Disease duration within 7 years from first symptom (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening 
  • Have shortness of breath 
  • Documented lung or pulmonary fibrosis 
  • Not have other serious illnesses 
  • Meet other eligibility criteria that you study doctor will explain to you as part of the evaluation process. 

read more on ClinicalTrials.gov

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

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Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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