Just looking for some thoughts from anyone who’s gone through or decided not to go through with testing for vEDS! My mother’s side have a history of it, including herself and my sister being recently diagnosed. I’m 27, am familiar with the symptoms/warning signs (of which some I have mild forms of, eg I bruise relatively easy but not quite alarmingly). As a male, and the main bread winner with a mortgage, I worry about how the potential of being diagnosed will negatively affect my life, for example financially and in terms of things like insurance. Does anyone have any useful info on this? I’m aware of how serious the condition is to course, and perhaps it’s silly but I don’t suffer from any serious pains or recurrent, potentially related illnesses and so sometimes it’s hard to figure out wether to go get tested or to leave it. Any and all advice is hugely welcome 
On the fence about vEDS: Just looking... - Ehlers-Danlos Sup...
On the fence about vEDS
Everyone’s situation and thoughts are different but I’ve been offered (due to 7 family members having brain bleeds aged 37 - 61). They believe I have hEDS maybe vEDS. I’ve not taken it up after seeing that life insurance, holiday insurance etc will be practically impossible. I’m 55 and all children are grown. Have two beautiful grandchildren. Had the most amazing life. I do carry an emergency heath issue card.
However if you want regular brain etc scans then diagnosis is critical isn’t it?
That’s really interesting to know Debra, i suppose kids is another thing for me, none as of yet but me and girlfriend would like to one day and obviously I worry about the potential of just passing it on. And yes, regular scans I imagine would require a diagnosis. In terms of life insurance, I have it, and again having not been diagnosed I obviously haven’t lied about not having it, but then once again I worry about an incident occurring and then the life insurance potentially not being paid out but I suppose you’d need to be an insurance expert to know about that! Pleased you have managed to have a wonderful life up to your 50s that’s fantastic long may it continue for you
I could be wrong but if you stay with same life insurance policy, have test and then god forbid anything really bad happens they pay out. You’d need to check policy wording and regarding declaring new diognoses plus have same policy for life. You probably need to be with them at least a year before test otherwise they wiIl not pay out.
I got mine out 30 years ago but stops in five years! Even with just my historical tia mini stroke only very very high fee complies will offer me insurance now. I haven’t updated them with tia and Eds etc as I believe I don’t need to.
I will be sure to have a good read through of my policy, thank you so much for responding and for your advice!
As you are thinking of potentially starting a family in the future, I would think very hard about being tested. It is possible for your girlfriend to have IVF and have the blastocysts (8 cells) screened for vEDS before implantation, so that you definitely won't pass it on. Otherwise it is a 50/50 chance.
As another poster says, I would get all your life insurance sorted and in place before you are tested - it does not have to be tied to a mortgage. I have hEDS so I cannot really directly answer your question.
A very good point, that’s really useful to know. Thank you Jay!
Oh travel insurance goodtogoinsurance.com are listed by Eds group as open to cover Eds. I’m with them. Not sure about vEDS quote so you can always look at them for all scenarios?
Good to know, will have a little look
Even though you have life insurance already, if you have kids you would probably want to get a good amount more so that their higher education would be covered in the event you weren’t around. I more than tripled mine and waited a few years (past the two-year period during which they could cancel me) before acting on my suspicions and getting diagnosed. Best of luck
That’s really interesting and a very good point about higher education - crazy how far in the future one has to think with these situations but such is life I suppose. Can I ask where in the world you’re from? I live in the UK, and I imagine life insurance cover and higher education issues differ depending on your country of residence.
Yes, you are right. I’m from the U.S. and have three kids. I decided I should have at least $1M coverage per child for education, with some more to help with housing and other expenses. I ended up getting approx. $4M of which $3M is mine and $1M is through my job. The $3M Policy is only until age 70 or so but I figured if I lived that long my kids would be launched by then because they are teenagers now. The policy is expensive, but peace of mind is priceless. Since obtaining it I have felt much relieved about the future. Hope that helps
20 years old and Am having a horrible time 
Fractures low trauma?
vADS presentation vs hEDS, especially on darker skin tones
EDS or HMS