Re: To Those who have VEDS

[Guest guest]

Hi, this is Helen C, from Adelaide, South Oz. My heart goes out to you and

your children, Beth and Betty. Especially you Betty with your 17yr old son.

(Hope I have the right people!) I have Type III and have often wondered what

it would be like to know you have VEDS and what to do about your children. My

prayers, good thoughts and best wishes go out to you. I would not like to be

in your position. I have had enough problems just with Type III and it is not

life threatening as VEDS is and I don't compare my type at all with VEDS.

I live in Adelaide, South Australia and there are no doctors at all who

know anything or want to find out anything about EDS. We were only officially

diagnosed about 3 yrs ago, by that time my now 21 yr old had done ballet and

about 3-4 years of rythmicgymnastics and of course was very good!!! At 20 she

was having bad back pain and fatigue and is not happy at all to know she has

EDS. My now 17 yr old was doing vaulting on horseback and I would cringe every

time she did anything and especially when she jumped off. Fortunately (not

meaning to sound happy about it but) she ended up with very bad ankles and had

prolotherapy which is very painful for us EDSers, she is ok at the moment and

she decided herself not to continue. She continues to look after a horse for

someone and rides but she knows she has to be careful. One doctor I asked, " What

should or shouldn't they do? " and he said, " Let them do what they like! " As a

person who did not know about EDS until recently I believe the jobs I

undertook when younger very much possibly made me much worse today than perhaps

I

would be and I don't want my children to be going through what I am at my age of

50. I was a nurse back in the seventies, lifting 6' stroke patients by myself

and I am only 4' 9 1/2 " and before that I was a caterer lifting huge pots and

pans etc. I did the Cordon Bleu Cooking Course in London and we had to whisk

meringues and do many other things by hand. Ever tried whisking meringue by

hand!? By the time I was about 45 I couldn't even wipe my sink down because of

the pain. Fortunately prolotherapy has help me tremendously. So I guess it

is relatively easy for us Type III's to tell out children but I realise it

must be so difficult for you two. My heart goes out to you both and anyone else

in the same situation and all I can say is that I am thinking of and praying

for you both and to let your heart tell you what to do. Hang in there. I hope

you have a lot of support around you.

Gentle Hugs

Helen C

South Oz

[Guest guest]

In a message dated 1/29/04 6:40:08 PM Eastern Standard Time,

epatton21@... writes:

> . I know I am fairly quiet on the

> list. I don't often say much, but I guess I feel out of place at times as I

> don't actually have EDS, although my life is definitely affected and has

> been altered and changed forever by it. I

Beth,

You are such an important part of the list! Please don't feel out place! We

need and enjoy you and your sweet , kindness youare always sharing with others.

[Guest guest]

AMEN!!

Love Lana

[Guest guest]

AMEN!!

Love Lana

[Guest guest]

AMEN!!

Love Lana