Anyone any experience of Ehlers-Danlos Syndrome?

[starrynight]

I have a 2 y.o. (just) with hypermobile joints and he has also been suffering repeated dislocations/partial dislocations of his elbow, wrist, ankle and knees.

We have seen an orthopaedic consultant who said that he hasn't been suffering the dislocations as it would be unheard of for anyone to have spontaneous dislocations without any initial trauma.

I have stumbled upon EDS and now wonder if he has this. I have 3 other children and only one has mildly hyperlaxed joints. I have never had anything like this, though my husband has had some dislocations (shoulder and elbow) but only after a trauma. I know it is hereditary so if there are no other people in the family with the condition does it mean it is unlikely to be this for my son?

Any help/ experience very appreciated.

Thx

[deepbreath]

Yes, I know a little about EDS as it is similar to the genetic condition that my dh and dd have got (Marfan Syndrome).

I know a couple of people that are initially diagnosed as having Marfans to be told later that they have EDS instead.

As you've probably found out already, EDS is a connective tissue disorder. It is hereditary, but some people may have it as a spontaneous genetic mutation (ie, nobody else before them in their family has it).

People with EDS have very hypermobile joints, which can cause spontaneous dislocations. The skin is often very pale and thin, or "translucent", veins are very clearly visible under the surface of the skin. Scars can take longer to heal. Blood vessels can rupture more easily, as their walls are thinner than normal. The skin itself is very stretchy too. I think that there can be problems with teeth, I remember seeing something about "peg teeth" being associated with EDS.

One lady with EDS that I know has particular problems with her feet. Finding shoes is difficult for her, as they are so uncomfortable.

I might have replied to one of your posts before (apologies if I'm being thick, lol!) Is there a chance that your family has a condition called benign joint hypermobility syndrome, if there are no other symptoms? Although it's "benign", it's main feature is very lax joints which can be painful and dislocate easily.

EDS website: www.ehlers-danlos.org/

Hypermobility info: www.hypermobility.org/whatishms.php

[black31cat]

My husband was diagnosed with benign hypermobility after his GP was concerned when he dislocated his elbow for no apparent reason. He was also having problems with his jaw partially dislocating, and was aware that he was very double jointed.He had the tests for Marfan Syndrome and Ehlers Danlos, including ECGs and eye examinations, but everything else came back clear, thank goodness. He has had no problems since but was told to avoid playing squash.
We were told that my DS was likely to be hypermobile, and he does seem to be, but thankfully there don't seem to be any other problems. Hope this is some help.

[cory]

My dd (11) has benign hypermobility syndrome. Some doctors consider this identical with Ehlers Danlos III; she certainly is affected in other respects than hypermobility (incontinence, irritable bowel). She is the first person in our family to have been diagnosed with this and the first person to have had serious problems, though I've had problems with my wrists since childhood and have been told it's weak ligaments, so possibly it does go further back. We still do not know if my ds (7) has a mild form of the syndrome.

My dd has been receiving treatment including physio and she has insoles to support her arches (often a weak point). She is quite severely affected, so needs to pace her day carefully to avoid overstraining.

You should try to get your son seen by a rheumatologist.