What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.

Ehlers-Danlos Syndrome is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. 

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Just Plain Old Warn (worn) Out

As many of you know, I suffer from Narcolepsy, but lately I have just been exhausted beyond belief.  I ended up in the ER 2 times in one week for my heart again.  One time they never did a CT of my head and my Rheumatologist is angry about this after the PA read the reports from the hospital. I had been told to follow up with them from my second ER visit to another hospital, but he swears I had a mini stroke caused by lido-cane poisoning from a dental procedure that day.  The ER told me my…

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3 Replies · Reply by Kristin Conley 5 hours ago

New Pain Med Nightmare in US

The DEA, the branch of the US government concerned with waging a Puritan war against its own citizens, has decided to change certain drugs to Class II, meaning you will need a paper script every single month. My pharmacist is warning people who take certain pain medications monthly, e.g., hydrocodone, that the new law, beginning Oct. 4, 2014, will require a paper script monthly. For me, this is a tremendous inconvenience. It is expensive to see the doctor, and now I need to do it monthly. Pain…

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3 Replies · Reply by Jay Jones 21 minutes ago

Telemedicine Patient Education

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the word about some research she is conducting.  The survey is about Telemedicine Sessions for Patient Education.   If you are interested the link is here ttps://www.surveymonkey.com/s/telmedpatiented.  If you'd like to read up on telemedicine, here is the wikipedia link: http://en.wikipedia.org/wiki/Telemedicine.   Cheers!

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DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!

Amazon is running a new promotion for Amazon Smile, their program that gives money back to Non Profits. For instance, BensFriends.org (my nonprofit) received $52 from Amazon Smile our 1st month trying it so it really works! And $50 is enough to support one rare disease support community for an entire month! To sign up: Click on Amazon Smile (smile.amazon.com) Choose Bens Friends as your charity of choice (listed as in Houston, TX).  If needed - go to My Account / scroll to Settings / find…

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Activity

Jay Jones replied to Jay Jones's discussion New Pain Med Nightmare in US
"As long as I'm on a roll.... check out http://www.drugwarfacts.org. It gets points for attributing…"
21 minutes ago
Jay Jones replied to Jay Jones's discussion New Pain Med Nightmare in US
"I guess we shall have to agree to disagree. In the first place, I question statistics that originat…"
1 hour ago
Kristin Conley replied to Kristin Conley's discussion Just Plain Old Warn (worn) Out
"Thank you Dancermom. I know it won't be easy but I will get through it. They took line dancing aw…"
5 hours ago
dancermom replied to Kristin Conley's discussion Just Plain Old Warn (worn) Out
"I'm sorry you are in a rough patch, Kristin. I wish I could say things will be easy soon, but we bo…"
5 hours ago
dancermom replied to Jay Jones's discussion New Pain Med Nightmare in US
"It is more inconvenient, to be sure, Jay, but after reading that deaths caused by drug overdoses (m…"
5 hours ago
Kristin Conley replied to Kristin Conley's discussion Just Plain Old Warn (worn) Out
"And look, I could even spell worn lol"
6 hours ago
Kristin Conley posted a discussion
As many of you know, I suffer from Narcolepsy, but lately I have just been exhausted beyond belief.…
6 hours ago
Michaela replied to Michaela's discussion Advice for traveling with EDS?
"Thank you!! I'll be sure to catch up on everything here soon once I'm home and settled!!

Thanks fo…"
6 hours ago
SK replied to Michaela's discussion Advice for traveling with EDS?
"Hey Michaela!

I agree, hang onto every moment! We often times stay up all night in pain, so why n…"
8 hours ago
Michaela replied to Michaela's discussion Advice for traveling with EDS?
"Most definitely. This trip was a wonderful gift and I'm not ready for it to end! Also the 10 hour f…"
8 hours ago
Kristin Conley replied to Michaela's discussion Advice for traveling with EDS?
"This means you had a good time though, right? It is hard to leave the ones we love :("
10 hours ago
David Kelly liked scott o's discussion DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!
19 hours ago
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