Vascular EDS newb
Hello all,
Well now a 34 year old male with EDS, most likely vascular type. Its nice to see so much more out here for people to cope and find information about EDS being available thses days. I was diagnosed with EDS about 7 years ago. The doctor I was reffered to wasn't really well versed in EDS. Most of my symptoms were mild compared to others she had heard about and had me checked for Mittral valve prolapse but didnt want to diagnose me due to the fact I'd likely lose my insurance.
After blowing it off for a few years more recently I realized I actually had symptoms more in line with Vascular EDS. Hypermobility mainly just in the wrists/fingers/ankles/toes. Facial characteristics, thin nose/lips, larger protrudung eyes, lobeless ears, translucent skin (although not as distinct as most Ive seen), easy bruising, constant gigngivial bleeding & recession, places on my face and shoulders especially easy blood vessels burst very easily. Before I was diagnosed I also had to have my Uvula removed due to it stretching out and swelling to the size of my tongue in my sleep.
Somewhat luckily I have very few if any issues with chronic pain altogether, maybe this is a symptom more associated with the other types of EDS? Has anyone with Vascular EDS also not had issues with chronic pain?
Anyways Im stuck in that catch 22 of if I went in to have my symptoms properly diagnosed for the type and severity of Vascuar EDS I'd basically lose my insurance. Being its a pre existing condition they wouldn't cover issues from it anyways. When the Obamacare went in I was ecstatic thinking I could finally get this diagnosed properly without being fearful of losing my insurance.
I guess Im stuck thinking that if all they can do is tell me what it is and theres actually nothing that can be done besides manage the symptoms whats the point of being diagnosed now. Im curious how others have juggled this conundrum...
Well now a 34 year old male with EDS, most likely vascular type. Its nice to see so much more out here for people to cope and find information about EDS being available thses days. I was diagnosed with EDS about 7 years ago. The doctor I was reffered to wasn't really well versed in EDS. Most of my symptoms were mild compared to others she had heard about and had me checked for Mittral valve prolapse but didnt want to diagnose me due to the fact I'd likely lose my insurance.
After blowing it off for a few years more recently I realized I actually had symptoms more in line with Vascular EDS. Hypermobility mainly just in the wrists/fingers/ankles/toes. Facial characteristics, thin nose/lips, larger protrudung eyes, lobeless ears, translucent skin (although not as distinct as most Ive seen), easy bruising, constant gigngivial bleeding & recession, places on my face and shoulders especially easy blood vessels burst very easily. Before I was diagnosed I also had to have my Uvula removed due to it stretching out and swelling to the size of my tongue in my sleep.
Somewhat luckily I have very few if any issues with chronic pain altogether, maybe this is a symptom more associated with the other types of EDS? Has anyone with Vascular EDS also not had issues with chronic pain?
Anyways Im stuck in that catch 22 of if I went in to have my symptoms properly diagnosed for the type and severity of Vascuar EDS I'd basically lose my insurance. Being its a pre existing condition they wouldn't cover issues from it anyways. When the Obamacare went in I was ecstatic thinking I could finally get this diagnosed properly without being fearful of losing my insurance.
I guess Im stuck thinking that if all they can do is tell me what it is and theres actually nothing that can be done besides manage the symptoms whats the point of being diagnosed now. Im curious how others have juggled this conundrum...