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Scleroderma Conference Videos 

Click on the following titles to watch videos of educational presentations at the 2017 Patient Education Conference.

 

Behind Every Dark Cloud is HOPE! - Andrew Botieri - Opening Keynote

When we are first diagnosed with scleroderma, our thoughts range from anger, frustration to “why me?” The most fearful is the unknown. With all the complications that arise from the many challenges people living with scleroderma face, some days are better than others. But where do you find the strength and spirit to persevere on your bad days? The answer-HOPE! Andrew is a survivor; recount his sudden life altering ordeal with scleroderma which almost took his life. Find out what the acronym of HOPE stands for and how we must first embrace our disease before we can manage it.

 

Evaluation and Management of Scleroderma Lung Disease-  Aryeh Fischer, M.D.

The two forms of lung disease most frequently encountered in systemic sclerosis patients are interstitial lung disease (ILD) and pulmonary arterial hypertension (PAH). Objectives of the lecture are to provide a better understanding of the intersection of ILD and PAH in scleroderma, provide insights into the diagnostic evaluation of these disorders, and review the current management principles targeting ILD and PAH.

 

Blood, Sweat and Tears - How Patient Registries Help in Scleroderma - Janet Pope, M.D., M.P.H.

There are many local and national registries for patients with scleroderma. They collect questionnaires, features of the history, physical examination and tests that have been done and many collect blood, and other tissue. An overview of lessons learned such as improving survival, features that are most important to patients and genetic findings will be highlighted.

 

The Fab Lab Tour - Carol Feghali-Bostwick, Ph.D.

Research conducted in academic laboratories is often the stepping stone for drug development. Similarly for scleroderma, discoveries made in academic laboratories can lead to the development of potential therapies. Take a virtual tour of a research laboratory and be introduced to the world of bench research. Included are examples of work in progress and how research is advancing our understanding of scleroderma.

 

Compassion Fatigue: Avoiding Burnout as a Caregiver - Sean Burlile, Ph.D.

Compassion Fatigue or secondary traumatic stress is a condition where a helper starts to feel secondary effects of providing support to a person with a chronic illness. If gone untreated, it can lead to a variety of health related issues. The session will include recognizing symptoms, strategies for self-care, and developing a self-care plan including relating to a support group.

 

What Should I Expect with My Scleroderma? - The "15%" Rule - Janet Pope, M.D., M.P.H.

Other than Raynaud’s, gut involvement and digital ulcers, many scleroderma features occur in 15% of patients. The 15% rule helps your health care providers know how often features such as complications from ulcers, interstitial lung disease, pulmonary hypertension, arthritis, Sjogren’s, muscle involvement and heart involvement occur. This is a practical way to understand what is happening in scleroderma organs.

 

My Child has Scleroderma, What Does That Mean? - Kathryn (Cassie) Torok, M.D.

My Child has Scleroderma, What Does That Mean? An Overview of Pediatric Scleroderma Pediatric Onset Localized Scleroderma (LS) and Systemic Sclerosis (SSc). This session fill focus on: 1) Definition and Background information on pediatric scleroderma and subtypes; 2) General clinical evaluation of pediatric LS and SSc; 3) Changes to expect early and then later in disease in both pediatric LS and SSc; and 4) General management medications and supportive measures (physical/occupational therapy, nutrition, dental care etc).

 

Drugs That Cause Scleroderma/Morphea - Arnold Postlethwaite, M.D.

A large number of medications have been reported to trigger onset of classic systemic sclerosis or localized scleroderma (morphea). Anticancer (chemotherapy) drugs, the largest class, will be 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 will also be discussed.

 

Stem Cell Transplants - A Patient’s Perspective - Bill & Cyndy Martin

Stem Cell Transplants have been a hot scleroderma topic since 2001 and are offered today both in and outside of clinical trials. We will explain what it is, how it works and who may benefit from this treatment. In addition, one patient’s experience with Hematopoietic Stem Cell Transplant will be shared.

 

Dr. Mayes Responds to Your Frequently Asked Questions - Maureen Mayes, M.D., M.P.H.

Dr. Maureen D. Mayes will discuss the following points and will take questions from the audience in this interactive session: 1.) How many cases of scleroderma are there and is this changing over time? 2) Clinical update on current and future therapy. 3) Research update on finding the cause and cure. 4) Success stories from the Scleroderma Foundation’s Research Grant program past, current and future.

 

Coping with a Chronic Disease: Do You Have What it Takes? - Elaine Furst R.N.

This evidenced-based, motivational talk will help people affected by scleroderma recognize the skills needed to take charge of their disease. Especially designed for people who are new to scleroderma, all are welcome.

 

Dry Eyes, Dry Mouth (Sicca Syndrome versus Sjogren’s Syndrome) - Philip Clements, M.D., M.P.H.

Dry eyes and dry mouth are frequently reported by patients with systemic sclerosis. There are many medications and a number of other disease entities that can occur in life that can account for some of the dryness. Less than one-quarter of the SSc patients with dryness of the eyes and/or mouth will be found to have Sjogren’s Syndrome. Evaluation and treatments for dryness will be discussed.

 

Eating Well: Tips for Pediatric Systemic Sclerosis - Tracy Frech, M.D., M.S.

In this session we will cover dietary issues in systemic sclerosis that are particularly troublesome for pediatric patients. Further discuss will focus on the fundamentals of eating well and nutrition.

 

Finding Calm in the Storm - Ron Sasso, M.S., L.P.C.

Presentation objectives: better understand and learn about 1) how stress affects the body; 2) the role mindfulness can play in recognizing the early signs of stress; 3) SUDS (subjective units of discomfort scale) to monitor anxiety and stress levels; 4) relaxation techniques that are easy to implement to help reduce anxiety and stress levels; and, 5) the importance of hope and remaining calm when facing the storms of life.

 

Clinical Trials: Why Are They Important and Why Should I Participate? - Dinesh Khanna, M.D., M.S.

In this session, the speaker will discuss the importance of participating in clinical trials and how to interpret them. Specifically, you will learn different phases of clinical trials, what questions to ask when approached to do a clinical trial and how clinical trials can help find an effective treatment for scleroderma.