Re: Osteopenia (pre osteoporosis) in a 19yr old---anyone else?

[Guest guest]

Rhea,

I too have osteopenia of my hip but also osteoporosis of my spine. Yes it is

part od EDS. One can have early onset of both arthritis and osteopenia/

osteoporosis.

Sincerely, S.

Osteopenia (pre osteoporosis) in a 19yr old---anyone else?

> Hi Everyone

>

> I had my first DEXA bone density scan today. I have a history of

> osteoporosis and osteopenia in my family (Mom, grandmom, and all my

> aunts that have had a bone scan have osteoporosis) and @ the age of

> 3, 5, and 11 broke my L arm, R arm, and L wrist in low impact falls.

> Anyway, with those two factors in mind I asked my GP to request a

> bone scan for me.

>

> The results ( I got it done @ a fab. new hospital with a 'patient

> education' program so they tell you what your results are and what

> they mean right after you have the test! :-D) were not great! At the

> age of 19, when my bone mass should be at its peak, I have osteopenia

> (pre osteoporosis)!!! I knew my bones wouldn't be great, but it was

> a bit of a shocker to find out they were this bad. My mom, a 52 yr

> old, has -1.2 osteopenia. I have -1.8!!!!!!!!!!! :-O Yes, that did

> give me a bit of a scare to find out right now my bones are worse

> than my Mom's. The results were based on a scan of my hip and my

> spine. So I've got to take supplements, beef up my calcium intake,

> and 'discuss' the results and whether I need to take drugs to further

> help this with my GP in about a month or so.

>

> Anyway, just wondering how many other 'young' people here have this!

> From my information I've read that EDS and osteoporosis and

> osteopenia are related.... is that true? The woman who did the scan

> has been doing scans for 25yrs and I'm the first person this young

> that she's done. She was a bit surprised to see it was ME here for

> the test and she was 'very concerned' about the results. I'm just

> curious to know how many others have been diagnosed with this so

> young. I'm planning on dealing with this in a big way as there is no

> way in heck I want any more fractures!!!

>

> Thanks for any input you all have!

>

> -Rhea

>

> PS. Oh yeah, and my spine showed 'degenerative changes'. I've had

> pain and grinding and I have mild scoliosis so I knew my spine (and

> many other joints for that matter) wasn't in tip top shape but was

> surprised the scan picked up degenerative changes.

>

>

>

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

>

>

[Guest guest]

> >From my information I've read that EDS and osteoporosis and

> osteopenia are related.... is that true?

There were two studies done on EDS and Osteoporosis. The first study,

" Ehlers-Danlos Syndrome and Osteoporosis " By Dr. Atul A Deodhar. MD

suggested that people with EDS were more likely to develop Osteoporosis.

This study, however, had only 7 participants.

The second study, " Bone Density in Ehlers-Danlos Syndrome " by Carbone

et al, was published in 2000. The Carbone study included 23 participants

and took into account other risk factors, including diet and exercise.

Initially, the study found higher rates of Osteoporosis in the EDS

population, but when they adjusted the results based on other risk factors,

such as weight and exercise, the difference disappears. In other words, the

real reason people with EDS have higher incidence of Osteoporosis is not EDS

itself, but the tendency for people with EDS to be less physically active.

Both of these studies were published in the Spring-Summer 2001 issue of EDS

Today. http://www.edstoday.org/newsletter/SS2001.htm

-Barb