Im 51, had both knees replaced before I was 50, and 31 other major surgeries. I was having pain in my left hip for over a year and decided to go see my joint replacement surgeon. On Friday, June 19, 2026, I was advised both hips desperately need to be replaced. It made me very sad. I’ve since had 4 more surgeries, so I stand at 35 major surgeries u der the belt and my first hip being replaced Aug 13, 2026. I was supposed to go see my elderly father in September (an 11 hr car drive) and my 30 year old daughter (who unfortunately is following right in my broken body’s footsteps) were going to make the drive. Now that surgery has been scheduled, I have to put off seeing my dad. I hope and pray something doesn’t happen in the mean time. He’s 83 and his health is not good. He mentions every single day how hard it’s getting to do the simplest things and he’s “running out of time”. When I was 3, I started having physical issues, and was misdiagnosed with juvenile osteoarthritis. I was told I would outgrow it, but the knee pain never went away. As I previously mentioned, both knees were replaced before I turned 50. With my hips, I honestly was looking for a time frame before I needed to replace them. The pain has been getting bad over the last year. So when I saw my joint replacement surgeon, I was in shock when he didn’t give me a time frame, but said both hips desperately needed replacement. Two spinal fusions, thumbs are fused, prior my had my tibia nailed after a serious break, internal surgeries, chronic migraines, ME/CFS, POTS, heat intolerance, and a myriad of other health issues…. hEDS has destroyed my body and me feel like I was 81, not 51. I should be thoroughly enjoying life at my age, and for the first time in 7 years, I finally able to get out of bed. I got diagnosed with CFS when I was 15 years old, back in the 80’s. I’ve lived with relapses throughout my adult life. I caught the original form of COVID back in January 2020, and have been in bed since. Often too tired to hold a conversation. My mother, who had lung cancer, was coming once a week from 50 miles away to help me, with my house, do my laundry, and cook for me. As guilty as I felt, I couldn’t control anything. After nearly 7 years of trying different supplements, I’ve found about 30 different ones that I take each day, and I’m now able to get out of bed, run an errand or two, get a grocery pickup order when necessary and go to Drs appointments. I e been disabled since 2010, and for the first time in 16 years, have a teeny bit of energy that I’m more than grateful for!! I do feel like everyone had moved on, I e list all my friends, bc once you can’t join theM anymore, they tend to forget about you. Most of my family doesn’t understand what I’m truly going through, and my sisters say I just need more sun and exercise, to get out of depression. They have no idea. My mother, now my father, and my daughter who has inherited everything wrong with me are the only ones who understand. But, I’m here to say, that things can look up, even after all this time. Even though both hips are getting replaced now, after both knees and 33 other major surgeries, I have a little bit of energy. This is more than I could say since 2009. So, I wish everyone who is struggling like myself, to know that someone DOES understand, and my heart goes out to you. And maybe, just maybe, things can start looking up, even at the darkest of times. Love to all my zebras 🦓❤️
#EhlersDanlosSyndrome
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