I’ll reach out to you via skype, OK? There’s lots to talk about with you!

Dr. Diana

I’m really glad you wrote down the medical events you have experienced. I can’t begin to imagine what it has been like to live through them all.

Writing things down helps us move information from one part of our brain to another. It helps us to see patterns. It helps us get some perspective and understand what to do next.

It certainly seems appropriate to consult a doctor to find out whether you have Ehlers-Danlos. Once you know what you are dealing with you can arm yourself with information and strategies.

Most importantly you can find yourself a community of people who relate to the issues you and your family are dealing with.

On the home page of our website jointpainrelief you will find a link to some great resources for people with Ehlers-Danlos.

One thing I am sure of is that your experiences are valuable to other people. Just hearing your story will make others feel less alone in what they are going through.

I am also sure that having to deal with so many big experiences has also made you a remarkable person.

Thanks again for taking the time to tell your story. I wish you all the best.

Regards
Julia

Hi Diana,

I have 5 children. All were born prematurely at about 34 weeks.My oldest daughter who is 18 has recently been diagnosed with Ehlers Danlos Hypermoblity type along with POTS/Dysautonomia.

We we live in Colorado but moved here only 5 years ago from the state of Georgia. It would seem ever since our move here to Colorado that all of us in regard to our health has started to decline. This has me wondering if the altitude here in Colorado maybe making the EDS and POTS/Dysautonomia worse.

My daughter has now developed severe braycardia symptoms, extremely low blood pressure. She has now in the last 3 days started to have more passing out episodes as well.

Last Monday she woke up in her bedroom floor after she had taken a shower, not knowing how she exactly got there. This left her upset as she began to realize she must have passed out. She remembers feeling dizzy and lightheaded prior.

Also since we’ve lived here she has suffered from several concussions during basketball games. She has had an avulsion fracture to her hip in 8th grade during a relay race.

In 2009 she had an ACL tear which was repaired by surgery but 2 weeks later had to have a knee manipulation surgery to break up all the scar tissue that was quickly forming that was keeping her leg from healing correctly.

Her knee is still not right and will probably never be the same and go straight ever again, even with lots of physical therapy.

Since my daughter has been diagnosed, I am thinking I myself should now be tested for EDS.

If it turns out that I have EDS, it would explain years of medical mysteries for me.

I wear a pacemaker now but only needed one after moving to Colorado after 4 months of living here.

I was born with a heart defect of an atrial septal defect with partial drainage of the right pulmonary veins into the right atrium. Pulmonary systemic flow was huge. 7.2 times 1, with pulmonary pressure only slightly elevated.

I then had surgery to repair the defect at age 4. I also have a persistant left vena cava that drains into the coronary sinus.

As a child I always complained of severe leg cramps that was explained as only growing pains by my doctor, that I would grow out of. I have had pneumonia several times.

I have always had headaches, at the age of 18, I started seeing a chiropractor which helped me significantly but the chiropractor is puzzled as to why I seem to always have a lateral atlas subluxation almost daily, when the atlas goes out the pain comes back.

My atlas has been describe as my coat hanger as it protrudes out to the right and can be felt by others.

Now that I am older I am having more and more problems with my SI joint going out.

I have ribs in my back that continue to sublax quite often, again without chiropractic care, I would be in much more pain.

Of course looking at me and my children we all seem to look completely normal, but of course it just seems that our bodies are falling apart.

Oh also a few weeks ago the eye doctor noted to me that my nearsightness and antistigmatism was the same with no changes but that I am starting to show some kind of thickening of fluid in the eye.

She said this happens as we age but she wouldn’t expect to see this much at my age of 42.

She suggested I take a supplement of fish oil to help with the problem. I am writing to you to get your opinion of all of this.

Do you think EDS very likely for me? Anyway, I could tell you a lot more but I’ll stop with this. Hope I have not overwhelmed you too much.

Any insight or advice you might have would be much appreciated.

Thank you,
Dawn of Colorado