Category Archives: Ehlers Danlos

Ehlers Danlos Syndrome

Update after almost a year; still alive :)

Not much to report – EDS is the same; POTS is worse. Luckily the Vanderbilt Autonomic Clinic is local and I’ve been able to donate my body to science while I’m still alive.

I still keep on eye on new EDS and POTS research but mostly post at Twitter @Jilly since it requires less effort than logging in here etc.

If anyone is still reading here, I hope you all have a great holiday season with loads of salt. 🙂

Chemistry Cat Sodium Joke

Ehlers Danlos and POTS links August 24, 2012

…you know you’re screwed when yr ailment is the final diagnosis on House….

Evidently Ehlers danlos syndrome was on House MD this week. I’m not a big TV watcher but I’ve seen the show before & thought it was pretty good – I like Sherlock Holmes. House and Wilson are a riff on Holmes and Watson so I was entertained.

I didn’t see the episode but from what I read, it sounds like it was kind of dreadful. Mostly about hoarding & with little explanation of EDS and no mention of the symptoms?

Links:

House M.D. and Ehlers-Danlos Syndrome

discussion @ the site of the Fox network

this physician’s blog thought the medicine in the episode was reasonable. (not surprising to me, given that most EDSers are likely to be misdiagnosed for years & are often not taken seriously by physicians). Misinformation abounds in the comment section, too.

Ehlers-Danlos Syndrome-Deal With It reaction to the show.

The Drama of EDS – The TV Freakshow good overview.

What does this mean?

Characteristics of chronic non-specific musculoskeletal pain [CNSMSP] in children and adolescents attending a rheumatology outpatients clinic: a cross-sectional study PDF

“In the psychosocial domain CNSMSP subjects had increased levels of anxiety and depression, and had more somatic pain complaints. In the lifestyle domain CNSMSP subjects had lower physical activity levels, but no difference in television or computer use compared to pain free subjects. Physically, CNSMSP subjects tended to sit with a more slumped spinal posture, had reduced back muscle endurance, increased presence of joint hypermobility and poorer gross motor skills.”

“Conclusion: These findings support the notion that CNSMSP is a multidimensional biopsychosocial disorder.”

I hope the subjects were tested for EDS.

What does that mean?

EDS Conference In Nov 11 & 12, 2010

There’s a 2 day conference in November, and it is $50 for patients. Are patients considered anyone with a connective tissue disorder? That’s pretty cool:

Management of Connective Tissue Disorders and Latest Research: Bicuspid Valves, Marfan Syndrome, Loeys-Dietz Syndrome, Ehlers-Danlos, and Related Diseases

November 11-12, 2010

InterContinental Hotel and Bank of America Conference Center
Cleveland, Ohio

Description
This course is designed to educate physicians and patients on the latest genetic findings for various connective tissue disorders, including Marfan Syndrome, bicuspid valves, Loeys-Dietz Syndrome, Ehlers-Danlos Syndrome, and describe advances in management strategies for patients with these disorders.

The course will present expert didactic presentations, panel discussions, and break-out sessions.

Hal Dietz on his research of connective tissue disorders

Watch on YouTube

Hal Dietz on the future of Ehlers-Danlos syndrome

Watch at YouTube

Changes At EDNF

The EDNF has closed their offices in Los Angeles, top leadership has stepped down, and they have hired a nonprofit management company. The new offices will be in Virginia.

Read more here, and there is a PDF press release on that page. I don’t know if you need to be logged in or not.

Excellent news.

I hope the Ehlers Danlos National Foundation gets their shit together, for all our sake’s.

An Update To Ehlers-Danlos National Foundation Banned Me

I posted an update on my other blog, Ehlers Danlos National Foundation (EDNF) 2008 Financials.

EDNF has banned me

Well the Ehlers Danlos National Foundation (EDNF) has banned me from asking questions about the way they run things, evidently. My last post was deleted. There was nothing offensive in it or antagonistic.

I know non-profits are hurting right now & they mentioned web site expense. Something with which I have a lot of experience so I gave them some tech/web free advice – open source is cheap and robust and lots of non profits use it.

The post was deleted and I’m banned from further participating.

EDNF is the most institutionally defensive organization I’ve ever encountered – and I’ve mostly worked for .orgs – any time anyone asks any questions about how things operate, they get their head cut off.

What, for pete’s sake, is wrong with membership wanting to be informed??

It makes me sad because EDSers need all the help we can get.

I don’t think I’ll be going to the conference now.

I know the National Marfan Foundation has EDS under it’s “other syndromes” umbrella and people there are pleasant and forthright because I’ve hung out on their site too.

If any other EDS organizations wants any free IT advice let me know – I have a Master’s and had 15 years experience before EDS and POTS whomped me.

-Jilly