Re: Betty C.

[Guest guest]

Hi

Thank you for your email. Thoughts & prayers are always welcome. I myself

had a skin biopsy done here in Calgary and then sent out to Dr. Byers in

Seattle. It came back and the genetecist here sent a letter saying " it is

compatible with EDS Type IV " We met with the geneticist and he went over

things with us. He basically told me to get a medic alert bracelet, take

cough medicine to suppress any deep coughing and if I was constipated to

take a stool softener and do not do heavy lifting etc. They are continuing

to do testing to isolate the exact gene and from there they will test our

other son. Our dilemma of course is to tell him or not. He knows that I am

being tested still. They also are doing testing on DNA of our younger son

who passed away. Yes our older one knows what his brother died from (a

ruptured aorta) and that they are looking at EDS as the cause, so I am sure

he can put 2 and 2 together, but until we get all the facts we are keeping

the status quo.It is an extremely hard time for us but especially for my

husband who is trying hard to deal with everything. I'm sure glad I have

this list as there are other people out there in similar situations.

Thanks

Betty

Re: Betty C.

> Hi Betty,

> You and your family have been through so much. What a hard thing to have

to

> face. For an adolescent, who usually have such senses of invincibility

and

> immortality, it would be so devastating.And he may in fact deny that it

is all

> anyway.

> I don't know what the answer is here. I know that you want to be sure that

he

> is safe and not doing something that puts him in further harm's way. As

Sue

> said, he is almost legallly an adult and lots of his decisions will be up

to

> him then. What does he think happened to his sibling? I must have missed

part of

> the story somewhere. Sorry. It sounded like he understood what is going

on

> with you. Does he understand that it is genetic? Does he see a geneticist

or

> other doctors for his EDS? I'm sorry that I am asking more questions than

> answering them. Kids usually know so much more than we think they do. Are

you

> positive that he doesn't already know this in his heart and is trying very

hard to

> forget it?

>

> I hope that someone can help you with this andwish that I had had more to

> offer you.

> sorry. Take care,

>

>

>

>