Instagram story viewer> @sclerodermaus> Posts

National Scleroderma Foundation

@sclerodermaus

8K

followers

125

following

Live better with #scleroderma
🧪 Advancing medical research
📣 Promoting disease awareness
💙 Providing support & education

POSTS STORIES REELS TAGGED

Download All

Find your community. Find your path.

No two journeys with scleroderma are the same, but there are important common experiences along the way. Whether you’re newly diagnosed, or supporting a friend or loved one living with scleroderma, the Foundation’s “find your path” tool is the first stop in understanding the fundamentals of scleroderma and the resources available to inform and support.

Visit https://scleroderma.org/find-your-path/ to get started. by @sclerodermaus

57

0

13 hours ago

Own your health journey through self-advocacy. Watch this inspiring workshop led by Cami Novachek, as she talks about how each person living with scleroderma can take control of their health journey. https://scleroderma.org/self-advocacy. by @sclerodermaus

9

0

2 days ago

Help light the way forward – be a scleroderma advocate!

Join us for a special #TealTalk on October 14 at 12 p.m. ET for the latest updates from Capitol Hill and some big news!

Register today at scleroderma.org/tealtalk-advocacy by @sclerodermaus

140

4

3 days ago

Your idea. Your event. More hope. 💙

Turn something you love into a fundraiser for the National Scleroderma Foundation! Celebrate a birthday, host a game night or dinner party, take on a fitness challenge, honor a loved one, or organize a workplace giving challenge.

Our new events site makes it easy to become a Hope Raiser: create your event, personalize your fundraising page, and invite friends and family to support you.

Explore DIY fundraising and get started at events.scleroderma.org—select Hope Raisers! by @sclerodermaus

18

3

5 days ago

We all know that Raynaud’s is one of the most common early symptoms for people living with systemic scleroderma. Learn more about Raynaud’s and scleroderma in a webinar from earlier this year led by Dr. Benjamin Korman: scleroderma.org/raynauds-webinar. by @sclerodermaus

26

1

7 days ago

🕑There is still time to register! Join us today at 2 p.m. ET for a discussion about how to take control of your own healthcare journey. https://scleroderma.org/self-advocacy by @sclerodermaus

9

1

8 days ago

A health care provider who regularly cares for people with scleroderma can help you understand your diagnosis and plan appropriate follow-up steps. The National Scleroderma Foundation maintains a directory of scleroderma specialists and centers across the country and includes a special designation for our certified Designated Scleroderma Treatment and Research Centers.

Visit scleroderma.org/treatment-centers to find a specialized scleroderma center near you. by @sclerodermaus

41

0

9 days ago

One of the most overlooked causes of pulmonary fibrosis is autoimmune disease. Interstitial lung disease, or ILD, is inflammation and scarring in the lung tissue. Pulmonary fibrosis is that scarring. It makes the lungs stiffer and less able to expand, so it becomes harder to take in enough air.

The early signs are subtle. Feeling more winded than usual on a walk. A cough that won’t go away. Fatigue that seems out of proportion. By the time symptoms feel significant enough to mention, damage may already be accumulating.

It’s also easy to miss. I see patients all of the time who are misdiagnosed with pneumonia who, in fact, have interstitial lung disease. Until you have a CT scan, you won’t know for sure.

Pulmonary fibrosis can be linked to environmental exposures, certain medications, radiation, and family history. But autoimmune disease is a cause I see diagnosed too late, far too often. ILD can develop with systemic sclerosis, rheumatoid arthritis, myositis, Sjögren’s disease, lupus, and other conditions. Sometimes the lungs are the very first sign. In one study, 1 in 3 people with ILD were found to have an underlying autoimmune disease.

This is where antibody testing matters. It can help uncover an autoimmune cause, and certain antibodies can tell us whether lung disease is more likely to progress.

If you have pulmonary fibrosis, ask whether an autoimmune cause has been ruled out. If you live with an autoimmune disease, ask whether you’ve been screened for ILD. The best care brings your pulmonologist, rheumatologist, and whole team to the same table.

I’ll be talking about exactly this with PF Warriors on Saturday, October 10 at 11:00 AM Central in a free Zoom webinar, Understanding Your ILD Multidisciplinary Care Team. Bring your questions about antibodies and your lungs. Registration link in bio.

Save this for your next appointment and share it with someone in the pulmonary fibrosis community.

NOTE: This content is for general education and is not a substitute for guidance from your own medical provider.

#interstitiallungdisease #pulmonaryfibrosis #autoimmunedisease #chronicillness #rheumatology by @sclerodermaus

72

22

10 days ago

⏯️https://scleroderma.org/BIPOC-Clinical-Trials

Lauren N. Smith, MD, assistant professor of medicine at MedStar Georgetown University Hospital, leads an important conversation exploring the role of clinical trials in advancing scleroderma research and improving health outcomes within the BIPOC communities. by @sclerodermaus

8

0

10 days ago

🫨😮‍💨😩 Everyone's journey with scleroderma is unique, but they all include a rollercoaster of emotions. Join Robin Rubin, MSW, for a webinar discussing strategies for managing wellness, resiliency, and more. Register today and join us October 22 for this free webinar.
🔗https://scleroderma.org/emotions by @sclerodermaus

37

0

11 days ago

You won't want to miss this webinar led by the Upper Great Lakes Chapter's Cami Novachek!
Cami will lead a conversation about how people living with scleroderma can move from patient to partner in their healthcare journey through self-advocacy. by @sclerodermaus

14

1

13 days ago

At one time or another, 90% of people living with systemic scleroderma experience Raynaud Phenomenon. During the month of October, we stand with @Raynaudsorg in raising awareness about Raynaud’s and sharing tips for how you can manage these symptoms.
Visit raynauds.org and scleroderma.org to learn more! by @sclerodermaus

234

6

14 days ago