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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.
My son, Flynn, was diagnosed with HMS almost 3 weeks ago and, although I'm
relieved to have a diagnosis, it's so scary.
I'm 39 and my children are 16 and Flynn will be 11 on Wednesday.
I have arthritis which I believe is related to HMS as I'm just as bendy as Flynn and always have been. However, I was told I just had growing pains so was never investigated for my flexible limbs, lol.
Welcome Maria! My name is Brittany and I am the co-founder and the main administrator here at EDSkids! Sounds like we've had rather similar experiences with the "growing pains!"
Hope to see you around the boards soon!
__________________ 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.
Britt- haven't we all!
Welcome! I'm Brooke, the resident tinyperson and deafie (I'm 5' tall and hard of hearing). I'm 16 and have type III (hypermobility). We're all nice around here, don't hesitate to pm any of us "regulars" with a question you don't want to post publicly.
__________________
EDS Hypermobility type
Raynaud's
Neurocardiogenic Syncope
Mitral Regurgitation
Hugs and lots of spoons!
Welcome to EDS Kids! I'm Johnna, and I'm Co-Admin. =] I hope you enjoy it here.
I'm sorry to hear about your son's diagnosis, but at the same time I too was also very relieved to have a diagnosis. When I was growing up, I was also told that it was just growing pains. My pain didn't start until I was 11, but before that I was very bendy and weaker than the other children. My mother always told me it was growing pains because that's what SHE was told when her pain started. However, when I got diagnosed she also went and saw a doctor and got diagnosed as well. Then not long after her, her mother, who told my mother it was all growing pains because that's what SHE was told... got diagnosed. It's a vicious circle that finally ended when I finally got my diagnosis at 16.
Getting diagnosed is petrifying, but it's also a huge relief to finally have a name to all the problems. It's a big bag of mixed emotions. It takes a lot of strength, but as long as you push forward, you can be perfectly happy - though I'm sure you knew that already. =]
If you ever have any questions, like what it's like to be a child with EDS (I was 11, like Flynn, when my pain started) or even ways to handle EDS as an adult (I am 21 now and married, so I have a few tricks up my sleeve when it comes to things like cleaning, cooking, surviving work and college) feel free to ask us; we will do our best to give you all the knowledge and support you want. (Or just someone to chat with :P)
-Johnna
__________________ I'm an admin so please let me know if you need anything! =]
Johnna - 22- EDS III, FMS, CFS, Hashimoto's Thyroiditis, HPA Axis Dysfunction, POTS, Meniere's Disease, Clinical Depression. CURED of Adrenal Insufficiency! =] I'm a ninja, zomg!