Hi Sarah! My daughter (30s) & I (50s) are both Zebras. When we were diagnosed 7 & 8 years ago we were told this was very rare. Within the last year or two I've noticed more medical care folks of varying kinds (from GPs, spinal surgeons & PTs) are so much more aware of EDS now! So my dear, I can easily & gladly say, people ARE starting to talk about it more, yay! The more diagnoses, the less suffering! 🦓🖤🤍🖤
Thanks for sharing! I relate a lot to everything in the video. I'm a male with EDS, and I wonder if males are less likely to talk about their experiences and issues with EDS, which is why they almost never appear in videos like these.
There are a lot fewer males diagnosed with EDS than females. This is also pretty common in autoimmune disorders as well that more women get them than men. I have a theory that since women have more frail tissues in general due to the effects of estrogen and less testosterone that the threshold of having issues is reached sooner in women with EDS. Perhaps the genetics of women makes them predisposed too? But yes I would also surmise that males afflicted (although fewer of them have it), would also be more hesitant to talk about it. I also would be curious to know if Marfan's syndrome occurs equally in males and females...it has so many similarities to EDS and is also a genetic connective tissue disorder?
Hey 👋 I’m over here in Australia and relate to a lot of what you’re saying, with the misconceptions, the friends not coping etc…. This illness is HARD. But it doesn’t mean we don’t have dreams and goal. Then as well when you have a disability it’s like people expect you to sit in a wheelchair and stare at the wall!! Grr! Please be encouraged and with healthcare (something I’ve thought about how to do in my country for awhile now and only just got more HOW), have a plan! Think about how healthcare needs to change in the US (and your state). Look at what other countries do (for all that is good in the world understand the Canadian, UK, NZ and Australian systems but don’t do them! Lots of other counties out there that are better). And formulate a plan!! Then you can speak to government and health insurers and all sorts of things 😊. It will take a team but awesome goal and I think you’re right at the point in history to potentially see something happen!!! Stay well!! ❤ from the other side of the world!
Sarah is awesome!!
Hi Sarah! My daughter (30s) & I (50s) are both Zebras. When we were diagnosed 7 & 8 years ago we were told this was very rare. Within the last year or two I've noticed more medical care folks of varying kinds (from GPs, spinal surgeons & PTs) are so much more aware of EDS now! So my dear, I can easily & gladly say, people ARE starting to talk about it more, yay! The more diagnoses, the less suffering! 🦓🖤🤍🖤
Thanks for sharing! I relate a lot to everything in the video.
I'm a male with EDS, and I wonder if males are less likely to talk about their experiences and issues with EDS, which is why they almost never appear in videos like these.
There are a lot fewer males diagnosed with EDS than females. This is also pretty common in autoimmune disorders as well that more women get them than men. I have a theory that since women have more frail tissues in general due to the effects of estrogen and less testosterone that the threshold of having issues is reached sooner in women with EDS. Perhaps the genetics of women makes them predisposed too? But yes I would also surmise that males afflicted (although fewer of them have it), would also be more hesitant to talk about it.
I also would be curious to know if Marfan's syndrome occurs equally in males and females...it has so many similarities to EDS and is also a genetic connective tissue disorder?
Hey 👋 I’m over here in Australia and relate to a lot of what you’re saying, with the misconceptions, the friends not coping etc…. This illness is HARD. But it doesn’t mean we don’t have dreams and goal. Then as well when you have a disability it’s like people expect you to sit in a wheelchair and stare at the wall!! Grr!
Please be encouraged and with healthcare (something I’ve thought about how to do in my country for awhile now and only just got more HOW), have a plan! Think about how healthcare needs to change in the US (and your state). Look at what other countries do (for all that is good in the world understand the Canadian, UK, NZ and Australian systems but don’t do them! Lots of other counties out there that are better). And formulate a plan!! Then you can speak to government and health insurers and all sorts of things 😊. It will take a team but awesome goal and I think you’re right at the point in history to potentially see something happen!!!
Stay well!! ❤ from the other side of the world!