Facts About Scleroderma for Newly Diagnosed Patients
Video Library
Scleroderma Overviews, Lab Test, Symptoms and Disease Specific:
Understanding Heart Related Symptoms in Scleroderma - What to Look For - Dr. Daniel Furst
2022 Virtual Patient Education Day with Cedars Sinai Scleroderma Center of Excellence:
Dr. Francesco Boin and Marianne Bernardo: Introduction to the Cedars-Sinai Clinical and Research Program
Dr. Francesco Boin: Clinical Updates in Scleroderma
Dr. Nunzio Bottini: Research Updates in Scleroderma
Dr. Ali Rezaie – Understanding Small Intestinal Bacterial Overgrowth in Scleroderma Patients.
Open floor Q&A for all speakers
Understanding Raynauds and Digital Ulcers in Scleroderma - Dr. Philip Clements
Renal Crisis in Scleroderma - Dr. Philip Clements
Sjogren's Syndrome in Scleroderma - Dr. Philip Clements
(Scleroderma Overview) What Your Rheumatologist Should've Told You At Your 1st And 2nd Visit - Dr. Philip Clements
Overview in Scleroderma - Dr. Brian Pedersen
Gastrointestinal Disease in Scleroderma - Dr. Suzanne Kafaja
Scleroderma and Dentistry (and Dr. Luis personal journey living with scleroderma) - Dr. Luis Del Castillo
Living With Scleroderma: How you can help your dentist help you - Dr. Dan Sizemore
Pain in Scleroderma: Recognizing Its Causes and What Can be Done About It - Dr. Daniel Furst
Understanding ANA and Antibody Testing for Systemic Sclerosis - A Helpful Guide for Patients
Ed Harris: Scleroderma Education Project
Therapies, Procedures and Treatments in Scleroderma:
The Benefits of Myofascial Release and Pilates Techniques for People Living with Scleroderma
Physical Therapist Sara Jacobs and Dr. Susan Nynazi
(For this talk, please add link to Sara's written instructions I attached to this email called 'Scleroderma reformer)
Sara also provided written instructions to help you in addition to the video as well as the article she referenced on ‘The effects of the myofascial release in diffuse systemic sclerosis’ Link copied: Effects of the myofascial release in diffuse systemic sclerosis
Nutritional Tips and Strategies to Help Bypass Scleroderma Problems - Dr. Susan Nyanzi
Stem Cell Transplant in Scleroderma - Dr. Suzanne Kafaja
Therapeutic Plasma Exchange for Systemic Sclerosis: A Guide for Clinicians Ed Harris: Scleroderma Education Project
Wellness/Emotional Health:
Elaine Furst - Scleroderma: Topic: The Third Wheel In Your Relationship (includes interviews from couples living with scleroderma)
Couples Interviews
Behind Every Dark Cloud is HOPE! - Andrew Botieri
Caregiving During Challenging Times - Ginny Maril Ph.D.
Happy in the Now; Living Well in Difficult Times - Dr. Kathy Gruver
Navigating the Rough Waters of Today: families can be strong vessels! - Elaine Furst RN
Caregiver Panel - Caring for a Loved One with Scleroderma - ARMC Patient Education Day
Panel: Pat Guerre, Chris Hulstrom and Pat Major
Caregiver Panel - Caring for a Loved One with Scleroderma - UCSD Patient Education Day
Panel: Emmanuel Munda, Martha Soto and Scott Noel
Learn to Laugh at What Scares You - ARMC Patient Education Day - Karen Vazquez
Scleroderma: Keeping a Healthy Mind - ARMC Patient Education Day - Ginny Maril Ph.D.
Disability:
Documenting Disability: Navigating the Social Security and Supplemental Security Income Claims Process
Speaker: California Licensed Attorney: Megan DiTolla.
Patient Advocacy:
The Challenges Scleroderma Patients Face When Admitted to the Hospital - Dr. Susan Nyanzi
The Importance of a Patient Advocate - Sandy Thigpen
Patient/Family Assistance:
NeedyMeds: Help with Healthcare Expenses for the Scleroderma Community
Carla Dellaporta, Director of User Engagement, highlights the educational and healthcare savings resources NeedyMeds offers - especially for those living with or caring for someone living with Scleroderma.
NeedyMeds: Is a National non-profit that connects people to countless healthcare programs, discounts, websites, sliding scales and educational forums they offer for people living with chronic illness and their families, free and anonymously - that will help them afford or save on their healthcare expenses.
Drug discount card: https://www.needymeds.org/drug-card-print
Brochure: https://www.needymeds.org/PDF/brochure_english.pdf
Patient Education Booklet: https://www.needymeds.org/PDF/Patient_Education_Booklet.pdf
Clinical Trials:
<Clinical Trials—They Never Actually Fail
Daniel E. Furst MD
The Latest Updates in Scleroderma Clinical Trials
Dr. Jonathan Mills
The Upside and Downside of Participating in a Clinical Trial
Elaine Furst
Scleroderma and Covid-19:
Scleroderma and Covid-19, New Variant(s) and what you now need to know - Dr. Daniel Furst
Covid-19 Vaccines, New Variants and Research Findings - Dr. Daniel Furst
COVID19 Testing & Vaccination - Dr. Daniel Furst
COVID19: Ever changing: treatments, vaccinations and telemedicine - Dr. Daniel Furst
Podcast:
Guest: Dr. Luis Del Castillo, Scleroderma Warrior and Doctor of Dentistry
Guest: Dr. Susan Nyanzi Returns – Mar 2021
Guests: Dr. Elizabeth Volkmann, Dr. Heather Bukiri and Research Coordinator Talaya Martinez from the UCLA’s Center of Excellence/ Scleroderma Program
Guest: Airick G - May 2021
Guest: Ed Harris, educator, advocate, researcher and patient from the Scleroderma Education Project
Facebook Live "The Sclero Sun Podcast" S2E7
Guest: Andrew Botieri
Guest: Lynn Steblecki
Guest: Dr. Brett Thombs of the Scleroderma Patient Intervention Network (SPIN) Oct 15, 2021
Guest: Scleroderma Australia Takes the Icy Hands Challenge Special
Guest: Dr. Francesco Boin, Dr. Nunzio Bottini and study coordinator, Marianne Bernardo from Cedar Sinai's Scleroderma Center of Excellence - Jun 17, 2022
Guest: Host Anna Strong interviews the Scleroderma Foundation of California's staff: Andrew Emmett, Executive Director, Tina Burger, Patient Services Director and
Sheryl Bishop, Community Liaison. Join us to learn about our new name and what that all means for our community.
