Invisible illness/MCTD

07/06/2025

Join TMA for our New Member Orientation – July 11 at 12 PM ET | 9 AM PT!

Whether you just joined or have been with TMA for years, this virtual event is for you.
Living with myositis isn’t easy, but you’re not alone. Come connect with others who understand, explore resources to support your journey, and meet members of the TMA community who truly get it.

RSVP today! https://www.myositis.org/calendar/events/new-member-orientation-2-2-3/

07/06/2025

Lupus in the News: The effects of lupus on the brain are still not well understood. However a recent study of brain MRIs has shown that inflammatory-type lesions were significantly associated with neuropsychiatric lupus events, like headaches, especially for younger patients and those with early disease.

The conclusion? Though expensive, brain MRIs could help in defining symptoms with lupus causes – at least until other biomarkers for neuropsychiatric lupus are found.

Link: https://ow.ly/FiPQ50WhcUE

For more on this topic, check out KFL’s blog article “Lupus and the Brain” with this link: https://ow.ly/32u750WhcUF

07/06/2025

Su***de is a tragic reality with far-reaching impacts. Having open conversations about su***de can help reduce stigma. If done well, people who post or publish about the topic can help to improve mental health literacy and change the narrative.

However, reporting can also contribute harm if done inappropriately, even if the content is created with good intentions.

To assist people writing, commenting, or posting about su***de, the Mental Health Commission of Canada compiled this checklist for newsrooms, influencers, or anyone discussing su***de to report safely and responsibly.

🔗 Read more about how to help improve mental health literacy and change the narrative: https://ow.ly/wT4t50WgRk0

07/06/2025

07/06/2025

Join us at the 2024 National Scleroderma Conference in Seattle, Washington, for an information-rich opportunity for people living with scleroderma.

02/12/2025

❤️‍🔥 Join me and More Than Lupus FEB 22 at 4PM EST for a Heart and talk (Live FaceBook)

Why?
February is American Heart Month❣️

Cardiovascular (CV) events (heart attacks, strokes, blood clots) are the most common cause of death in lupus patients

These CV events occur an average of 10 years earlier than patients' peers. In our Black Female patients, these events occur 20 years earlier

They are preventable!! ... at least the risk can be reduced with important interventions.

We will discuss these important points and more importantly provide practical information people can use right away!

02/12/2025

02/12/2025

Want to make a difference in your community? Host a walk and raise awareness for scleroderma, wherever you are.

Scleroderma Canada will guide you and help you plan the best event in your community. We have a detailed Make a Move coordinator toolkit available on our website to get you started. (Link in our bio!)

Email riva@scleroderma.ca with any questions you might have, and to get you started on the planning process! Deadline to sign up as a coordinator is Feb 4th.

02/12/2025

Looking for support? You're not alone! 💙

Join one of our upcoming National Support Groups to connect with others who understand your scleroderma journey.

This Week & Next:
✨Young Adult Support Group: Ages 18-30s – Feb 6, 7:30 p.m ET
✨ Parent Support Group of Children/Teens with Scleroderma – Feb 11, 6:30 p.m. ET
✨ Newly Diagnosed Support Group – Feb 12, 7:00 p.m. ET

Find details and register on our website calendar at www.scleroderma.org

02/12/2025

When you’ve just been diagnosed with a rare, debilitating, chronic condition, it can be hard to find your footing. The whole terrain seems to be different, unfamiliar, and confusing. Here are 10 tips for first baby steps on your myositis journey from nurse Shawna Nielsen, who knows the territory well.

https://www.myositis.org/blog/shawnas-top-10-tips-for-the-newly-diagnosed/