Blog Info

Maybe I should start by saying what this site is not:

  • It is not an official non-profit organization (although I’ll be happy to recommend some to you)
  • It is not a source of indisputable irrefutable medical and scientific information (but I do have some cool links)
  • It is not a charity or place for donations to be made (I can barely manage my own money – don’t give me yours!)

Now – with that out of the way, I can share some of my hopes for what this little blog site actually might be. 

Most of all I hope it will be a place for people facing a diagnosis of Ehlers-Danlos Syndrome to find refuge; to realize that you’re not alone and that there ARE REAL RESOURCES available!! 

Depending on the doctor who made your diagnosis, you may have been given very little hope for a “normal life” (whatever that is) or even for survival. 

Pooey on them.

It seems I’m finding more and more that many doctors or medical professionals may technically know something about EDS, but – what they know is very outdated or at this point considered no longer accurate.  Some of the stories I hear from newly diagnosed patients would be funny if they weren’t so terrifying. 

In their defense, doctors have an endless number of “rare” diseases to keep track of and can’t possibly stay current on all of them.  But, the good doctors are the ones who know this – and who don’t pretend otherwise.  It’s so much better for a doctor to say they’re not certain about something than to rely entirely on information they knew a long time ago.  Especially in fields where genetics play such a big role.

SO – if you’ve recently been given a harsh dose of pessimism from a well-intended but ill-informed medical practitioner, try to put it behind you now.  Do your best to clear your mind and start fresh in your search for accurate, valid, and most of all CURRENT information.  If I do this right, I’ll be able to offer some links and resources that can get you to the relevant information. 

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5 Responses to “Blog Info”

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Hi
Nice looking site! The more the better!
Hey, does anyone know about the effects of radiation or chemo on our strange ed bodies? Of course, I am coming up with zero on the web. I have cancer and have to make a decision real quick. My surgeon “suspects ” that radiation could be a very dangerous thing for me, but I think I would prefer a more precise evaluation.
Any thoughts? Know anyone with first-hand experience with chemo or rads w/ EDS?
I have written to every likely large org. that might have studies, etc. but no nothing !!

HELP !
Thanks, Michele

Wow! A very inspiring site, and some surreal stories. You are definitely a saint for putting this together. I wanted to introduce you to my site as well http://www.heartosaurus.com. I hope that I too can offer any insight and inspiration for anyone in your sphere who has an aortic aneurysm. Thanks again for your wonderful site and what you’ve offered.

Thanks for this really great EDS resource. I have lost so many family members due to VEDS and recently discovered the AVM in my sons brain while at Dr. McDonnel’s connective tissue study at NIH. She has saved his life. I have also discovered jusy how hard things get for the researches working on the connective tissue studies. Some of the research is at risk….. Our government has to be made aware of the seriousness of EDS / VEDS. The List of Compassionate Allowances Conditions with the SSA should include VEDS, how do we take the steps to have this life threatening disorder make the list? Might our friends at NIH help????Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income… http://www.socialsecurity.gov/compassionateallowances/

Help, can anyone recommend a good Dr in south FL?

Hi, I’m Samantha. My best friend, Laura, and I are in the process of starting a NFP organization for EDS awareness and research in the memory of her brother and my friend, James, who passed away from EDS on January 10th earlier this year. I have been looking all over the internet for research projects that we would we able to donate our money to, and I feel like I am just not finding anything. If anyone would be able to direct me to some current research projects, that would be great. I am also looking for a few NFP organizations to talk to, so if anyone has information on any, I would love to here it! Also, if anyone is interested in sharing their story with us or helping us raise awareness and research, please let me know.

Thank you


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