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. 

Rheumatologist Appt in December

Hi, all, I'm new to the group.  I have Chiari Malformation Type 1, and I was decompressed in Sept. 2013.   Because of my on-going symptoms, my NS has referred me to a Rheumy to get checked out for EDS.  I wanted to run things by y'all on here and see what y'all think. On Going Symptoms: fatigue, stiff neck, crackling sound in neck when rotating, constant back pain, every joint I have snaps, crackles, or pops constantly, imbalance, dizziness, headache History: thin, soft skin(not stretchy),…

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1 Reply · Reply by Michaela Nov 13


Ok. This is embarrassing. I am forgetting things at work. Things that I've been doing for over 16 years. Also, asking stupid questions. For instance, today I was proofreading pages for a book I designed, and asked the editor where certain pages were. (I had looked 3 times for them). She responded that they were there, and when I looked again, there they were, and I then remembered seeing them, just minutes before! This kind of thing is happening too often to me. Could it be part of the…

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4 Replies · Reply by SK Nov 7

Tell me something good!

Hi everyone! Hope it's a good day for you! This is such a great place to come to ask questions, vent, moan and groan when we need to, but lets change the mood today! Tell me something good that has happened in your life, or something you are looking forward to!

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8 Replies · Reply by SK Oct 30

Weddings with Chronic Illness

Does anyone have advice for planning a wedding with chronic illness? I'd like to avoid any common mistakes, if possible! I'm busy at work planning two wedding receptions (we are an international couple) so if anyoone here has gotten married or jsut has advice in general, it would be very helpful. I just want to know abut anything that I might want to keep in mind. We're pretty poor so this is as much of a budget thing as we can manage. One reception will be indoors at restaurant and the other…

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2 Replies · Reply by Kate Oct 28

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Angelia left a comment for Angelia
"I live in generalized Kansas City, mo. Does anybody know of a good group of doctors? I need a gener…"
Angelia updated their profile photo
SK left a comment for Aimee
"Welcome Aimee! Glad to have you, please join in!"
Michaela left a comment for Aimee
"Welcome, Aimee. Let us moderators know if you have any questions or we can make you feel at home he…"
scott o left a comment for Aimee
"Hi Aimee!
Huge welcome to the community! This is a great place!
One tip, if you have specific quest…"
Aimee is now a member of Ehlers-Danlos Syndrome Online Support Group
scott o left a comment for Angelia
"Big welcome Angelia! This is a great place!
One tip, if you have specific questions it's best to st…"
Nov 13
Michaela replied to Mariah Schroeder's discussion Rheumatologist Appt in December
"First of all, welcome.

I'm sorry you've been through so much but I'm glad that you're getting som…"
Nov 13
Angelia is now a member of Ehlers-Danlos Syndrome Online Support Group
Nov 13
Mariah Schroeder posted a discussion
Hi, all, I'm new to the group.  I have Chiari Malformation Type 1, and I was decompressed in Sept.…
Nov 12
SK replied to Marcy Roberts's discussion Forgetfulness
"Hi Marcy,

I go through these times, when I have trouble getting anything to stay in my mind, or l…"
Nov 7
Michaela replied to Marcy Roberts's discussion Forgetfulness
"If it's fibrofog, perhaps adjusting your meds will make a difference. Brain chemistry is tricky and…"
Nov 3



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