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The Sjögren’s Foundation has produced a video series on Sjögren’s disease called Exploring Sjögren’s. If you have not seen the YouTube channel, Exploring Sjögren’s, you really must take a look! The channel is the brainchild of Steve Taylor, Sjögren’s Foundation CEO and Brad Lemack, a fellow patient, great guy, and artist’s agent. In other words, Brad knows a thing or two about making videos! This past Fall/Winter the planning and footage was shot and post-production followed. Take a look …
The first six videos are each dedicated to exploring Sjögren’s in a different way. For example, topics range from Clinical Trials to Pregnancy and Sjögren’s. I’m in a couple of them along with other patients and doctors. It’s a great mix of education and patient voices that can corroborate how we all feel every day.
Episode 1 is embedded below and is an introduction to Sjögren’s. This is a great video to share with friends and family to help them understand more about the disease. It is a professional and authoritative video source that presents the information clearly. It allows us, as patients, to save some emotional energy explaining our disease to friends and family! A really good first step to share with others.
Exploring Sjögren’s Channel can be found here. Be sure to view them all and share them on your own social. It’s a good way to learn and help spread the word about Sjögren’s Disease.
If you are seeking other way’s to have meaningful conversations about having an autoimmune disease, and why it’s so difficult to get help, you may want to read and share this blog post on the Rheumatic Disease Report Card in the USA!
Awesome! Moving forward positive. Thank you and Steve and the SJ Foundation vision!
Wonderfully informative ,as I took the time to browse through a couple of other videos and got some more insights on our wonderful illness. Thank you.
I like that we’re calling it a “condition” now and also using the term a rheumatic autoimmune disease. Excellent terminology I think. I have it and duagowhen I was 71.
do any of you have severe lag cramps at all times of the day.? I have diabetes also and cant figure out if it is that or something else I have not been diagnosed with Sjogren’s, but I have every symptom and the fatigue also. Should I see a rumatologist first?
Hello Julie, I am not a medical professional but a patient like you. I happen to hear a lot of concerns with Sjogrens because of my work with the Sjogren’s Foundation. First, it is my opinion that you should have a Rheumatologist with Sjogren’s, but not all Rheums are very knowledgeable about the disease. So go to sjogrens.org to download the Dr checklists and bring to an appointment. If the Dr says something like “you have the easy Autoimmune disease, or it’s just a dry eye/dry mouth disease” you might want another rheum. If you don’t have a lot of options for Rheums, then you can take on the task of educating them and suggest they learn ore about the disease through sjogrens.org by signing up for Sjogrens Quarterly (for medical professionals). You should also be a member of the foundation and then you can get access to a lot of info about symptoms and symptom support. For my leg cramps, I use a magnesium powder nightly (mix like a hot tea) that had helped a lot and has helped me sleep better. THe product is called Calm or you can get one called Ion Magnesium Fizz. I love these products (but that’s a personal opinion.) Finally, you may want to join the Smart Patients Sjogrens chat center so you can talk with other patients. It’s a free resource. Good luck.