I'm New - Boyfriend has EDS

[Usako]

Hello all!

I do not know much about EDS other than what I've read online or what my boyfriend has told me about it. His EDS has always concerned me and it makes me sad because he believes his life expectancy is super short because some doctor told him this...

It bothers me because not enough doctors have researched this and do not have enough information to make definitive diagnosis. I've seen a lot of people live long lives with EDS, but is there anything I should know to keep him healthy and to prolong his life without surgery?

He's only 27, but the idea that in about 13 years, the end could come, that scares me more than anything. Please tell me more about EDS, both good and bad, so I don't have to just think about the bad things...

[cyberbarn]

First of all welcome. It is great that you want to learn more about your boyfriend's condition. I hope my son finds someone like you one day!

Second, EDS is what is known as an umbrella syndrome, that is there are several sub groups. in this case there is 14 (officially 13 as of the 2017 new nosology, but they found another one recently). Only one of those subgroups has a shorter life expectancy, that is the vascular type.

So before we tell you more about the condition it would help to know what type of EDS your boyfriend has. Most people with EDS have hypermobile EDS or the similar group Hypermobile Spectrum Disorder and there is no difference in life expectancy between that and the general population.

[Usako in reply to cyberbarn]

Thanks for your reply, it’s hard to know because so many doctors are not specialized or know much about EDS. My boyfriend was advised he may have Vascular but what are the main signs that differentiate them? I don’t believe he does from what I’ve personally researched but what do I know...

I just get nervous about it because even though I love him very much, it is scary to think about outliving him by a large amount of years. I know that we risk dying daily by any number of things, but that fear is always in the back of my mind because losing him would be the worst thing to happen.

I just need to know how to know for sure which sub group he would fall into... what kind of specialist would be able to advise accurately? 😔

[cyberbarn in reply to Usako]

If you are in the UK you can go to your GP and ask them to diagnose you with the RCGP EDS Toolkit.

rcgp.org.uk/clinical-and-re...

Have a look at that and take the URL with you to your appointment. If he has vascular, which is actually very rare, then he would have been referred for genetic testing.

Are there people in his family that have died of ruptured organs at a young age? That is one of the signs that it is vascular, but if that hasn't happened in his family, that could be why they didn't refer him to genetic testing. The genetic test is the definitive test for that.

However, the vast majority of people don't have vascular, they have one of the others, and as I said, it doesn't shorten the life span. Have a good look at the tool kit and see what you think.

[Yogibear110]

A genetesist via a blood test would determine which EDS. With vascular EDS they also say there are certain facial features like large eyes, small chin, a thin nose. He should be having an echocardiogram every year. My daughter has just been tested but most are hypermobile EDS. Genetesist gave the diagnosis of h EDS but we insisted on a blood test to rule out vascular eds since my 3 sisters died before 7 months of age. Those with eds have more anxiety and depression than the general population and then also ADHD, autism or bipolar disorder. My son has eds with autism and ADHD. I have ADHD with eds and my daughter has bipolar disorder with eds. My dad had Eds and he lived to 58. My brothers died at 46 and 49 through alcohol abuse due to anxiety and insomnia. It all depends on which EDS you have and what other co morbid conditions you also have.

[ZandriaC in reply to Yogibear110]

Yogi bear....

I noticed you mentioned you and your family having eds w asd or adhd. My son has hf asd, aka aspergers, and was diagnosed by an occupational therapist as having a severe sensory overload processing disorder. Of course she wouldn’t write that down so I could get him assistance in the classroom but that’s another story for another day. Lol! 😉 at any rate, I was also told by my son’s dr that it’s possible I might hv asd. I’m not sure that’s true, but I’m sure it runs in my family so anything is possible. I’ve just never heard anything about the relationship btwn asd and eds before.

[ZandriaC]

This is all very interesting. I’ve never heard about short life spans in regards to eds. I’ve also not heard about the relationship of other conditions coinciding w eds. I was diagnosed by a chiropractor, who was also a d.o., and then diagnosed roughly again by my regular dr. I can’t get a formal diagnosis bc I can’t get genetic tests done. Unfortunately due to my health issues I’m too sick to work so I’m on state health insurance and they won’t pay for the tests. They are roughly $8k to do the tests. Since I also hv fibromyalgia, gastroparesis, chronic daily headache w underlying chronic migraine syndrome, ptsd, depression, and a host of other minor illnesses as a result of the larger ones, it’s difficult to determine everything.

My problem is every time I move something else dislocates. I hv bones n my body that dislocate just by moving. The most painful are my ribs, hips, and tailbone. When I walk having my toes and arches dislocate tends to get painful as well. It’s just something I’m learning to deal with now. I take pain medication frequently and I’m bedridden a lot bc I figure the less I move the less will dislocate.

[Ashley_hEDS]

The life expectancy is typically only shortened by vEDS. Vascular Ehlers-danlos. Prone to aneurysms or ruptures.