Scleroderma

Scleroderma One PURPOSE of the Chapter is to help patients make contact with each other through Chapters, Newsletters & Workshops. Thank you!

The Support Group extends a welcome to all. When I was the Miami Support Group Leader, I began this FB page to promote awareness. While I am personally no longer living in FL or participating in the Group there, I had so many followers that I continued to maintain this page. The Foundation has their own FB page, located at https://www.facebook.com/SclerodermaSEFla and would be a great place to fin

d current events in the South Florida area. Thank you for all your kind words and shares. Having developed the disease internally, I am not able to update as often as I had in the past. I will continue to do my best and know a cure is just around the corner! June is coming, so let's all spread awareness during Scleroderma Awareness Month!

Always a good reminder!!
02/02/2022

Always a good reminder!!

Are you guys ready for the upcoming snowstorm? ❄️ BE sure to bundle up and keep warm!! Here are some facts below! Stay warm, Ohio!
National Scleroderma Foundation Ohio Chapter National Scleroderma Foundation Scleroderma Raynaud's Disease

12/30/2021

You're invited to the first SRF webinar of 2022! Learn more about GI involvement in systemic sclerosis in a webinar presented by SRF-funded researcher Dr. Zsuzsanna McMahan, Assistant Professor of Medicine in the Division of Rheumatology at Johns Hopkins University. She will also provide an overview of current knowledge and emerging research for patients and will answer questions after the presentation.

The webinar will be Tuesday, January 18th at 1:00 PM ET/10:00 AM PT.

Sign up now at https://bit.ly/gi-webinar-fb

https://www.scleroderma.org/site/SPageServer?pagename=patient_centers_list #.YTKAAhgpAew
09/03/2021

https://www.scleroderma.org/site/SPageServer?pagename=patient_centers_list #.YTKAAhgpAew

Arizona | California | Colorado | Connecticut | District of Columbia | Illinois | Louisiana | Maryland Massachusetts | Michigan | Minnesota | New Hampshire |  New Jersey | New York | North Carolina Ohio | Pennsylvania | South Carolina | Tennessee | Texas | Washington | Wisconsin

09/03/2021

We are proud to team up and collaborate with eight other organizations to drive awareness of interstitial lung disease (ILD) and to present the first-ever ILD Day on Wednesday, September 15th.

ILD can be a complication of systemic scleroderma and about 15% of people living with this disease have ILD. There are more than 200 types of ILD, which is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. The inflammation and scarring injure the lungs, making it difficult to breathe and get oxygen to the bloodstream.

ILD Day will be recognized with media outreach, social media communications, an educational webinar for patients, and a survey to understand existing awareness. Stay tuned for more details and join us in spreading awareness. For more information, visit https://bit.ly/srf-ILD-Day.

07/09/2021

BIPOC Support Group
ZOOM: Sunday, July 11, 2021; 4 p.m. Eastern Time

Please join the Scleroderma Foundation BIPOC Support Group when guest speaker Susan Nyanzi, Dr.P.H., M.C.H.E.S., A.C.S.M., F.R.S.P.H., will discuss nutritional tips and strategies for individuals living with scleroderma. Dr. Nyanzi graduated from Loma Linda University School of Public Health with a Doctorate in Public Health with a sub-specialty in chronic disease management. As a public health professional, Dr. Nyanzi specializes in integrated lifestyle counseling for the prevention and management of chronic degenerative disorders such as scleroderma, diabetes, heart disease and rheumatoid arthritis. She additionally consults with individuals who have scleroderma on how to best manage their disease through nutrition and physical activity. As a person with scleroderma, Dr. Nyanzi is board member of the Foundation's Southern California Chapter. She has presented on scleroderma at local and national conferences, seminars, and support groups.

Register for the Zoom presentation here http://ow.ly/Wd8450Fs3aS

Southeast FL
06/24/2021

Southeast FL

06/12/2021
Hello FriendsThank you for going through all the modules of the Self-Management program! We hope you found support and ...
06/12/2021

Hello Friends

Thank you for going through all the modules of the Self-Management program! We hope you found support and resources for self-managing Scleroderma in your life.

We wanted to invite you to participate in the Scleroderma Research Registry. This opportunity is open to all Scleroderma patients 18 years of age and above worldwide.

Click here to participate!https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=C8TXELX77Y

Your participation is voluntary. Research studies may involve symptom experience, rehabilitation, non-pharmacological treatments, and more. Thank you for considering this opportunity.

Sincerely,
The TOSS Team

Self-Manage Scleroderma
University of Michigan Scleroderma Program
7C27 NIB
300 North Ingalls Street
Ann Arbor, MI 48109

05/08/2021

https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf

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South Miami, FL

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