Ehlers-Danlos Syndrome Support Group

I wish I could be of more help, I have the hypermobility type of EDS.
I think the more information we have about our bodies the better we are able to cope, so I would be in favor of having the testing, and who knows from the sounds of it maybe you will be "ruling it out" rather than adding a diagnosis.
I do understand your anxiety and will send good thoughts your way. Good luck to you.

Thank yo so much. I appreciate your caring and support.

I have seen 2 genetic specialists. The first wanted to do a skin biopsy test which I declined. The second wanted to do a blood test which I did do. The results are pending as it takes 3 months. I was told by this doctor (#2) that even a negative result does NOT rule out type IV. Given my history and that of my family, she will still treat me as having vascular EDS.

I was previously diagnosed with Classical and Hypermobility type. I have had numerous surgeries and have alwasy had a hard time getting the bleeding to stop before I was closed up.

I was told that genteics is far behind in the knowledge and testing available but it is being worked on. The best thing to do is to make all of of your health providers aware of your diagnosis and insist that you are carefully monitored always no matter what.

I hope this helps you with your decision on testing. So far, there is only tests available for type 3 and 5 collagen and they are not 100% accurate. That is why my current gentecist is being cautious and treating me with great care.

Best Wishes,
Bella

I think most people with EDS of any type have a mixture - bit of this, not that but some of this - Im the same.

They only class things to get a handle on stuff but people dont ever tend to fit perfectly into square boxes - right?

I agree with a lot of the responses. My sister has EDS type 4 also, but with her's came along a whole slew of other things including a tissue disorder so when she had her 5th surgery they couldn't sew her back up. This disease sucks but there is a way to get through it and if you are doing well then that it all that matters. Just keep a close eye on things, my sisters whole issues started when she thought that she had gas pains but it turned out to be a ruptured intestine. Any pain needs to be taken very seriously. But like my sister now she has a majority of amazing days.

I have the hypermobility type of EDS. You should get the testing i think. It will help you understand better.

i got hypermobile plus the vascular. although i dont sit with all the signs of vascular. it was by chance we found it. by doing a biopsy and due to my dad having it (my mother has hypermobile). you can get a cross of two kinds apparently and thats what i got. they keep finding new ones that are a cross. so perhaps you have a cross of two kinds like me. i also have a muscle dystrophy which was first diagnosed before the eds an we just figured out its one of those things that seem to tag along. lol.