Elhers Danlos Syndrome

Last time I mentioned Ehlers Danlos Syndrome on my blog my post views suddenly went up.  When I typed Ehlers Danlos blog into a search engine I got a few links to various blogs but most of them hadn't been updated for a long time.

Since I posted Maddison's letter on my blog I have thought about the things she wrote about the lack of awareness of Ehlers Danlos Syndrome.  I know I had never heard of it until Isaac was diagnosed with hypermobility and I did some googling.  If you look hard enough there is a lot of information and online support groups out there but you do have to look for it.

Somewhere between 1 in 5000 and 1 in 10,000 people have Ehlers Danlos Syndrome.  This makes it rarer than Downs Syndrome (1 in 800), Autism (1 in 100) and Cerebral Palsy (1 in 278).  It is only slightly rarer than Spina Bifida (7 in 10,000) which I was quite surprised at as I think Spina Bifida is a lot more well known than Ehlers Danlos Syndrome.

When people ask me what's "wrong" with Isaac (and we get this more often now he has his wheelchair) and I explain about Ehlers Danlos Syndrome I normally get the "I've never heard of that before" response.  If I say that the main symptom is hypermobility a lot more people know what that is also most people's experience of this is being able to bend their little fingers and thumbs backwards.  It's not much but it's a start.

Update on us

This week we have been ill with colds.  Isaac has been even more exhausted than usual.  Malachi woke up on monday wheezing and coughing which of course triggered his reflux.  Malachi's reflux is caused by his stomach muscles being floppy rather than actual acid and now his weight is ok the drs are reluctant to pump him full of drugs that don't do much anyway.  But I thought the gp might be able to do something about his cough/wheeze so Simon took him to the gp and they came home with an inhaler and he had a session with a nebuliser at the dr surgery.  The GP thinks he has a virus which triggered an asthma attack.  We need to give him the inhaler until the virus goes away and bring him back to the GP or call the out of hours GP if he gets bad again.  I'm hoping this will be something that's a one off or he'll grow out of it rather than adding something else to his ever growing list of medical problems but we'll see.  I know mild asthma isn't a big thing but Malachi already has 4 not very big things going on.

I've recently discovered how to check how many views each post on the blog gets.  Most posts are getting 1-3 views but the one about Eleanors anniversary got 7 I think and the one about Isaac using a wheelchair in tesco got 17.  I have no idea why these 2 posts were so much more popular than the others and I'm curious so anyone who read those ones and not the others feel free to comment in the box to satisfy my nosiness.  I'm also wondering who the 17 people are who read the wheelchair post.

 My idle wonderings are mostly due to being on hold with the tax credit people for nearly 2 hours and not knowing how to use the speaker phone.  I'm trying to do my tax credit renewal and I dread to think what my phone bill will be.  I've just had to hang up so I can get Jeremiah from school so will have to do the whole thing again later.