Hello!

[Guest guest]

Hi!

I'm also new to the list. I joined you, because I'm trying to figure out,

what's wrong with me. I have not been diagnosed with EDS.

My name is Jenni-Juulia and I have OI type 1. I haven't had many fractures,

but I have suffered from many kind of joint pain all my life. I appologise,

that I don't write english very well but I live in Scandinavia.

I had an appointment with a doctor on friday. I haven't met him earlier, but

he was very good. He saw, that my right hip was not in a right position and

that caused a " snapping " (and hurting) sound when I walked. Because of the

hip pain I have walked with crutches about 2 years now. The doctor pulled my

leg and got the hip to the right position, and now I'm wearing a belt, that

keeps my hips together. He couldn't promise, that my hip will stay like

this, but he promised to pull my leg again if needed. I really hope that I

finaly get better. I'm getting married next summer and I wan't to walk the

isle without crutches.

I don't know, if my harms are caused by OI, or is there something else wrong

with me? Is it possible to have both OI and EDS? Or does all OI:ers have

flexible and hypermobile joints?

I have also had troubles with bleeding. I have got blood transfusions quite

often lately. A few years ago they found some tiny " angio dysplasia " in my

small intestine, but they were not bleeding during that examination. I'm

very anemic all the time and that makes me very tired and worried. I red

that people with VEDS have thin hair and especially thin skin. I'm happy

with my hair, but I can't say if my skin is VEDS type. It stretches well,

but what's normal and unnormal?Could someone give me more details about

VEDS, please? Is there any pictures of VEDS skin at the internet?

One specialist told me, that OIers don't have trouble with bleeding. Never.

I don't know, why it was hard for me to believe him. Why do we get bruises

so easily then? Is there any bleeding OIers on this list?

I have hypermobile fingers, but I think that's normal among OIers too. And

my scars do look like they are made of thin papyrus. But can these symptoms

be caused by OI? I don't know.

It would be nice to read about your experiences. How did you get

diagnosticed etc?

I would also like to express my gratitude to le, who told me about this

list.

Thank you for your time,

Jenni-Juulia (27, student, female, deeply in love