Re: Re: For Betty

[Guest guest]

Beth

Thanks for your input. A question...how old was your son when he had the

rupture and also how old is he now plus (sorry) how active is or can he be??

Many thanks

Betty

Re: For Betty

> Betty,

>

> I am not sure you are familiar with my story with my kids, but here goes

the

> Reader's Digest version and hopefully this will be helpful to you. My

> husband passed away in 1992 as the result of a rupture of one of his iliac

> arteries. At the time we had no idea that he had VEDS or that there was

> anything wrong with him at all. The surgeon who had operated on him that

> night queried VEDS and thought it worthwhile to pursue. The children's

> paediatrician referred me to a geneticist because it was the children that

I

> was concerned with. They were 4 and 2 at the time. Anyway, after the

> geneticist tried to find someone who would be able to test some of the

> tissue from my husband and was unsuccessful, we discussed whether to test

> the children. I did wrestle with this decision because it is a difficult

> one. Was my husband better off living his life and doing many things that

> he had done, or was it better to know and to be able to plan and steer my

> children in a less dangerous direction if they turned out to be positive

for

> VEDS. Anyway, I decided to have them tested and figured that if they did

> have VEDS then having the knowledge may work in their favour as I would be

> able to watch for things and would be able to steer them in safer

> directions. Both of them came back as positive for VEDS. For a very long

> time I didn't really tell them anything. I did watch their activity, but

as

> they were very young they really wouldn't have any comprehension of what

> having VEDS really would mean, etc. As they got older I gradually

revealed

> bits of information about VEDS and then did tell them everything about it.

> It was shortly after that that my son suffered his rupture of his right

> subclavian artery. Now, the pain was not awful and definitive initially,

> but because I was aware of his diagnosis we did seek medical treatment

> quickly. Having the knowledge allowed me to be able to be more pro-active

> when it came to seeking treatment when things may not have appeared very

> serious. After his surgery the geneticist that we have had since the

> diagnosis came to the hospital to see me and the one thing she said was

that

> she had always wondered if testing the kids was the right thing to do, but

> given that survived the surgery and that we sought treatment, she

> then knew that it was the right thing to do. Of course, no two people are

> alike and everyone handles things differently. No one can predict how

your

> son will react or what he will do if you have him tested and he does have

> VEDS, but he also may not and then you can let him continue on with a

> full-active life.

>

> There are no easy answers, but having knowledge can keep you better

prepared

> for what may be happening in your body and can make it possible for you to

> seek treatment and intervention earlier rather than later.

>

> Anyway, I hope this is helpful.

>

> Take care

>

> Beth

>

>

> ----- Original Message -----

>

>

> > Hi

> > A very real concern question..........As I am sure I have posted on this

> > list before, I was recently diagnosed with VEDS and they are still doing

> > testing to isolate the particular gene. Our 13 year old son passed away

> very

> > suddenly of a ruptured aorta. My question is : How many of those that

are

> > diagnosed with VEDS have kids wnd got their kids tested and then told

> > them????? We have a soon to be 17 year old.The genetecist told us to

have

> > him tested when we have the isolation......our concerns are this : he is

> an

> > active hockey player, golfs, and plays in 2 school bands.....how would

he

> > react to this , how would it change his life, how could he carry

on??????

> > We are so very confused and really don't know what to do. DO we tell him

> (if

> > it turns out that way) and scare the poor scare ?, or Do we not and let

> him

> > live right now as he's always done? I know what I've been like since

I've

> > been told and I wish I had never heard of this EDS!!!! I suffer from

> > anxiety and my quality of life has gone downhill. I constantly worry my

> > husband , son family & friends. HELP! HELP! & MORE HELP!

> > Betty

> > ----- Original Message -----

> >

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

>