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Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
I'm Katherine (or Kat if you prefer), and I'm 17 and from Oklahoma, USA.
I just stumbled upon a Facebook post linking to here a few hours ago and decided to check it out! I must say I'm happy I found this place, as its become difficult for me to post in the EDS groups on Facebook because certain family members think I'm a hypochondriac and when they see my posts claim I'm just looking for attention
Anyway, I have EDS Hypermobility. I just got diagnosed with that last August after my lil sister got diagnosed last May I think. My doctor had suspected, but didn't send me to the geneticist until I showed up one day with a dislocated shoulder that I got from rolling over in bed lol.
In addition to that I have GERD, IBS, anxiety and depression. I also heavily suspect I have SI joint dysfunction and chronic fatigue, but I doubt I'll ever get my doctor to diagnose me. Which leads me to my next point.
There are a lot of key figures when it comes to my health that don't really care or think I'm a hypochondriac. Among these are my parents and several of my siblings, as well as my doctor, and to a certain extent my boyfriend.
My boyfriend is actually quite supportive, but I think he gets frustrated with me a lot because to him it seems like no matter what he does I still hurt, and so he sometimes says mean things he doesn't actually mean. It's hard on both of us, but he's stuck with me since the beginning of this whole mess, which must count for something.
TinyBrooke (whom I did not realize frequented this forum until I started browsing), can you PM me your dr's information again. Perhaps after I turn 18 I'll be able to switch to him.
A bit more about me as a person? I love animals, computers, drawing, and music. I'm a musician and play violin and bassoon mostly, but others as well. Violin is a bit hard though because my fingers sometimes hyper extend and my mom won't let me get finger splints.
Um... what else..? (I can't seem to remember what I was going to say next )
Oh well. I hope to actually share with others here and gain information from everyone else... Sorry if this seemed a bit random lol. My mind is constantly jumping from one thing to the next.
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EDS Hypermobility, GERD, IBS, Anxiety, Depression
"The light at the end of the tunnel may be an oncoming dragon."
Haha hey Katherine!
(we go to school together, those that don't know)
Yeah, it's often best to go to the secret groups where your friends cannot see the posts. I'm in a couple, but I'm thinking about letting one go because there's way too many people and it ALWAYS has to be about EDS or related disorders and never any fun. I'm in a couple MUCH smaller groups where i know almost everyone and the posts aren't always entirely sane. I'd be happy to add you to them (one is for "rainbow" zebras if you know what I mean, and allies of course) if you want.
Let me know if i ever need to kick some sense into your boyfriend, I haven't given a nice a**-kicking in quite some time.
I know I've mentioned this a couple times, but most of my family (save my sister) thought I was looking for attention until I nearly broke down into tears. After that my family and I sat down and had an open, honest talk. My dad is still a little on the fence, but has gotten much better about it. Maybe try that?
PS- Sorry this place is kinda dead. We're working on it. Sort of.
PPS- I love the quote in your signature. I have a strange feeling it's from an HP book. Am i right or am i getting my fantasy series mixed up again?
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EDS Hypermobility type
Raynaud's
Neurocardiogenic Syncope
Mitral Regurgitation
Hugs and lots of spoons!
Hey Kat!
I'm Brittany, Administrator here at EDSkids!
You sound like a awesome person, as all of the people here are, and I am sure you will fit into our nicely tight knit family here at EDSkids very well.
Bassoon!? Was that hard to learn?! I've always wanted to play that since I know how to play seven instruments!
Hope to talk to you soon, feel free to add me on Facebook if you have not done so yet!
PS- If you ever have any problems and/or questions please feel free to ask!
__________________ Brittany Lynn Stay Strong.
I am a site administrator and if you ever need anything please feel free to contact me.
"some of us are just trying to get through the day without falling apart."
A good friend is a connection to life - A tie to the past, a road to the future, the key to sanity in a totally insane world.