Tag: Elhers-Danlos Syndrome
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Living with Ehlers-Danlos Syndrome: Aging, Understanding, and Hope
When you live with Ehlers-Danlos Syndrome (EDS), every day can feel like a puzzle you weren’t given all the pieces to—especially when you’ve lived most of your life not knowing you even had it. For me, EDS isn’t just a diagnosis; it’s a life journey that has spanned four decades of unanswered questions, unexplained pain,…
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Rare to Rare: Caregiving for a Rare as a Rare
Being a caregiver is a challenging role, but when you’re balancing your own chronic illness while caring for a spouse with another rare disease, the challenges intensify. I live with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that leads to chronic pain and physical limitations, while my husband, Dexter, has Fanconi Anemia (FA), a…
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Thinking About Moving to Georgia? You Might Want to Think Twice!
Today’s post takes a detour from my usual topics, but it’s an issue that weighs heavily on my heart: the crumbling state of Georgia’s healthcare system and its devastating impact on those of us with rare diseases. Living with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder, means constantly navigating a complex web of medical…
Country Girl Gone City 