I am glad to hear you are finding answers and thus the relief of knowing.

Wishing you well.

Now that you know, you can come up with a plan to treat it or cure it. I do not know anything about it to say, but I do wish you all the best and pray that you find relief. Now kick it's but like a SG Lady should.

so glad you are finally getting some Long over due answers

Congratulations! Hope the further tests work out for you.

Congratulations on your diagnosis! Sounds so odd to say but now you don't have to deal with the worry and fear that uncertainty brings.

It's more or less what you expected, but at least now you know and can get treatment. Fingers crossed that it's not the vascular kind, and there's no heart condition (which you'll need to watch out for for the rest of your life, no doubt). Are there any research studies you can participate in?

I'm glad you have the diagnosis and it's not as much of a mystery.
Besides being a fan of your totally amazing modeling...because you are special beyond simply looking as hot as you obviously are...you're really a cool person,have interests in lots of the same stuff I like ....well...I really hope your DNA testing and echo cardiogram go's good....not sure how strange it is from your perspective that you have fans out there that care about you for real but yes I do care and wish you the best of health and most important to be happy .

I seem to have some of those symptoms...I don't talk about it but my health isn't so good...in part I come from living pretty much alone and from a distant family much like your friend Izzy,being fairly in shape from weight lifting (despite internal pain) and being a tall man at 6'4" people tend to assume I can take anything or unless I really look ill than there must be nothing wrong with me....it gets really frustrating some times.
I don't know exactly what my medical problem is but my breathing is shallow,pain in my chest and some other problems....anyway I'll be seeing a doctor soon I hope despite how they pretty much don't seem to give people the time of day being all too busy looking at their stupid clip board and so quick to perscribe pills instead of do their damn job...again frustrating.*Huffff*.

I'm just so glad you got on track to figuring this thing out,to knowing what it all is exactly and what has to be done because it's upsetting to see a person not treated properly and written off due to the stereotype of what an illness has to look like or to be given the quick fix and usually totally off and incorrect answer.

That's amazing! I know how much it means to have a NAME for it! Take care of yourself!

I hope it gets a bit more well known and they really start putting research behind a cure' or at least a way to help supplement's your collagen production/usage. You are in my thoughts

I'm glad you have a diagnosis finally, even if it's what you most feared it was. But knowing is better than not knowing/pretending it's something else.

And now, a new leg of the adventure begins...

I'm seeing a specialist about maybe having EDS today.

Happy you have a diagnosis, but sad that its something so lame