Managing Ehlers-Danlos
The Six Steps of Proper Pacing
Pacing techniques, such as the “spoon theory,” can be incredibly helpful for managing energy levels and preventing overexertion. This involves breaking activities into smaller chunks and taking breaks as needed to allow for rest and recovery. Sounds easy enough, right? UGH- NO!! You kinda need to plan to do this successfully to know which spoons […]
Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients
For our January newsletter, journalist Karina Sturm spoke with rare disease advocate Nthabeleng Ramoeli. Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and […]
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]
The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior
Let’s be blunt: chronic illness and pain sucks. Many of us don’t only live with Ehlers-Danlos Syndrome (EDS), but also have a variety of comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), affectionately known as the EDS trifecta. Living with all of these takes ‘chronic illness and pain’ […]
EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations
This time of year, it can be hard for anyone, especially those with a chronic illness like Ehlers-Danlos syndrome (EDS), to gear up for the holiday madness. The pressure to shop, cook, wine, dine and be fine is too much! You might not be able to travel or gather with loved ones for various reasons, […]
Webinar – Tips on How to Have Some Sense of Control with Out-of-Control EDS
Join us on Tuesday, May 10th at 12 pm EDT on a live Zoom call to learn ways to help improve the quality of your life if you face EDS. As we know, there is no cure, but these suggestions might help you have better control of your out-of-control disorder. My special guest speaker is […]
Spoons Theory | What Actually It Is?
When somebody raises spoons, what do you think first? You might contemplate the piece of silverware. One that is utilized to eat things like soup or ice cream. Except if you are somebody with an ongoing chronic illness, then, at that point, you may rather think about the Spoon Theory. Until someone doesn’t properly know […]
Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!
Vascular Ehlers-Danlos condition is an inherited connective tissue problem that is brought about by deficiencies in a protein called collagen. It is viewed as the most extreme type of Ehlers-Danlos disorder (EDS). Common symptoms incorporate thin, transparent skin; bruising; specified facial appearance; and fragile arteries, muscles, and inside organs. Vascular EDS is generally caused by […]
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