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KIDS DX'd with EDS


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Its ***** to be right ; but all the indicators were there for my Kids. 2 have been officially DX'd with others to be tested . As I have stated in many of my last posts I have rcently purchased a POWER PLATE which I am putting extraordinary faith in. I hope it will be the godsend I am expecting for ALL of us. I read with great inspiration the stories on this forum so I know my Kids will be Okey Dokey. However, it is always better when its just you!!

Kite 7

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That is dissapointing to hear. Are your kids symptomatic? I'm glad, in a way, that they have you to "pave the road" for them as it will hopefully give them a bit of an advantage on how to manage this illness. Maybe things will go a little easier for them because of your experiences. Take care. Laura

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Kite, sorry to hear your kids will live with EDS too...but I hope they will stay as healthy as can possibly be, and will keep their bodies in their best possible shape to deal with the loose joints.

In hindsight, my mother and all her three of her daughters (of which I'm the first) have EDS. My mother has the skin manifestations, early arthritis in her hands and back, and low bp. Her scars and stretch marks are classic EDS III. My two sisters have minor symptoms--both get keloids, as do I (which are rare for caucasians, which I am). One has hip pain due to being hypermobile in the hips, and foot problems, and the other has problems with exhaustion, but she keeps on it with ssri's and a great exercise routine. The two of them did a half marathon last year to support friend who has lukemia; I'm carrying on the tradition this year with my 10k race which also supports lymphoma and lukemia research. Not a half marathon, but better than nothing!

I write all of the above to give some hope that very productive lives can be had, even with EDS. Nina

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Just wanted to add a few things on top of all the wonderful advice about EDS you've already gotten so far.

Both my children (now adult women) were diagnosed with EDS III. I remember when our girls were first diagnosed, it seemed like a grim reality when we were told this diagnosis but we later found that each person who has EDS seems to have a different degree of severity with it so hopefully your children will have a milder form of it than most. Each of our girls suffer with different things from EDS compared to each other to a lesser or more severe degree as well as myself. Just for an example, one daughter has more chronic stronger pain in multiple joints than the other daughter, while she has gastric problems from it and the other has no gastric problems at all. They each also share common symptoms/problems as well from EDS though.

Just to touch on what Steph said in her post, which I strongly agree with, is to be careful with contact sports and limit what and how much impact is placed on the joints to avoid perm damage. We were not aware of EDS at the time when our youngest was playing contact sports & dance so we didn't know about proper splinting, etc. so she had terrible damage done to her joints because of it which has led to her pain levels being what they are I'm sure. Also if your children are in need of splinting for the knees, we used bioflex splints and found them very helpful. Plus having a well imformed PT that is familiar with EDS is very helpful.

We have used a variety of things to help with the pain levels for our youngest over the years. If you are in need of information for the chronic pain problem, just send me an email and I would be happy to share what we found that seemed to help and what didn't help (for us anyway). Also we made certain accomodations at their school to make things a little easier to get things done without such a struggle.

wishing you the best and at least they have you to lean on and they will know you understand just how they feel when they have a tough time to get through with EDS. That very thing helps my daughters get through rough spots, just knowing someone else can relate on that level.

Good luck and best wishes.

Edited by sally
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