Ehlers Danlos Syndrome

Go down

Ehlers Danlos Syndrome Empty Ehlers Danlos Syndrome

Post  Anna's Mom on Wed Jul 07, 2010 4:55 am

Here is a family I know and the newpaper article about them:

http://www.goupstate.com/article/20100706/ARTICLES/100709878/1106/living06?Title=Benefit-to-help-with-family-s-medical-expenses

Mom and the two kids suffer from EDS (Ehlers Danlos Syndrome). EDS can contribute to headache/migraine.

They have been through a lot of struggles, including complex surgeries. Very brave family.

Cheryl
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Paradox on Wed Jul 07, 2010 6:56 am

Yes, jvery brave. You have come across many courageous people on your journey, haven't you Cheryl?
Paradox
Paradox

Posts : 1698
Join date : 2009-12-03
Location : Midwest

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Wed Jul 07, 2010 7:05 am

Yes, too many to count!

Cheryl
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  cupatea on Wed Jul 07, 2010 10:39 pm

Thanks for sharing the link, Cheryl.
I know personally what this scary diagnosis can mean. My close friend passed away last year at the age of 36 due to Ehlers-Danlos syndrome. I like to volunteer for the foundation in LA.
Cheryl, I'm so sorry that your friends are all going through this. 3 diagnoses in 1 family...incredible.
They are lucky to have you as a friend.
Take care,
Tanya
cupatea
cupatea

Posts : 92
Join date : 2009-12-18
Location : S. Calif

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Thu Jul 08, 2010 8:16 am

A geneticist said Anna was borderline for EDS. The only thing I'm really concerned about is her dura--if it is weaker than it should be. Being she has had two CSF leaks that we know of, it is possible her dura is weak. She isn't very hypermobile.

I know many with EDS, and their lives are greatly impacted by it.

This girl's story is currently being shared on a Chiari forum. A very serious situation with huge physical and financial implications. The photos of her incisions opening up are sobering!

http://www.caringbridge.org/visit/joannareid

Cheryl
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  sailingmuffin on Thu Jul 08, 2010 1:00 pm

Hi Cheryl,

Thanks for sharing the article. I ran accross their story a while ago when doing some research into dysautonomia, which I believe Nick has in addition to Ehlers-Danlos. They are an extremely brave famnily.

This whole thing makes me wonder if there some wierd connection between chronic migraine, dysautonomia, Ehlers Danlos, and Chiari. All seem to involve the brain acting abnormally. I have been tested for both Ehlers-Danlos and Chiari. I don't have Ehlers-Danlos or Chiari. But I definitely have dysautonomia and chronic migraines. Because of you and Anna, I have come accross several chiari sites. It amazes me how many people who suffer with chiari (which is more than enough for one person to deal with} also have ehlors danlos, dysautonomia or something else with it.

Pain free dayts,
sailingm
sailingmuffin
sailingmuffin

Posts : 550
Join date : 2009-12-05

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Fri Jul 09, 2010 8:52 am

Yes, it is amazing how many Chiarians have Intracranial Hypertension, EDS and/or POTS/dysautonomia. I think it takes reading Chiari forums and reading patient journals to learn about these things. I didn't have a clue when Anna was first diagnosed with Chiari.

There was a gal here at Ronda's long ago who wrote about her Chiari experience (Donna, a nurse from TN). That is how I first learned about Chiari. But she didn't seem to have these other coexisting conditions.

Here is a woman from the UK who recently died following Chiari decompression surgery:

http://www.thisisbristol.co.uk/news/Rare-brain-condition-took-Sally-soon/article-2387655-detail/article.html

Cheryl


Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Mon Aug 02, 2010 1:55 pm

http://www.dailymail.co.uk/health/article-1297976/Second-skin-gives-new-lease-life-toddler-joints-dislocated-time-played.html

Cheryl
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  lesherb on Mon Aug 02, 2010 3:00 pm

I think I saw an episode of Mystery Diagnosis that featured a woman with this.

Do you really think this is an answer to Anna's leaking?
lesherb
lesherb

Posts : 516
Join date : 2009-12-03
Location : Florida

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Mon Aug 02, 2010 4:58 pm

If she has EDS, it is a mild form. No answers to anything. Don't know if she's leaking because she hasn't had a myelogram.

Cheryl
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  lesherb on Tue Aug 03, 2010 2:18 pm

What's the myelogram holdup?
lesherb
lesherb

Posts : 516
Join date : 2009-12-03
Location : Florida

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Anna's Mom on Tue Aug 03, 2010 7:34 pm

There is a possibility of doing both a myelogram and ICP monitoring, but the neurosurgeon offering these tests would like Anna off a certain medication first so the testing is more accurate. At this point, Anna is still on this med. It is her G.P.'s call--whether to take her off or not. So we wait...and I don't know what will happen with it
Anna's Mom
Anna's Mom

Posts : 656
Join date : 2009-12-12
Location : Minnesota

Back to top Go down

Ehlers Danlos Syndrome Empty Re: Ehlers Danlos Syndrome

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum