Re: For Betty

[Guest guest]

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 -----

>