Ehlers-Danlos Support UK

Suffering is cruel but so many agencies see to get great pleasure from tormenting people who are beyond desperation

When i was 12 i was told i had loose joint and that i could have sugery but that they didnt think it would help, I have suffered for 39 years with pain tiredness, chronic vomiting, dislocations of knees, fingers snapping in and out of hips and shoulders 21 miscarrages 5 premature births, 4 by C-section including twins sprains etc, not one person ever suggested EDS then when my youngests the twins were 6 i found out that my Brother and sister had both been diagnosed with Type 3 and TypeIV, I eventually saw a Rhuatologist in 2011 and was told it was probably Type II and that i had degenerative disc disease. At that time i was using a walkin stick and a walking frame still non the wiser,

Last year i beacme totally housbound I could no longer walk it became excursiating and after years of opids i couldnt take much more there was no support no help no advice still isnt but I managed to get an amazing OT i wont give his name but he has in the last wee had a stair lift and shower with chair lift put in. I myself have now self refered to the wheelchair service as the only time i can go out is when my husband or children push me to the local village i can no longer drive as started having seizures after taking Pregablin for pain not that i could anyway now due to not being able to move very much.At the end of 2013 i had an MRI now instead of 1 disc there are 4 so another condition DDD(degenerative disc disease) That much damage in 2 years Why is it a crime to have a disability, I am now going through the process of having to argue that i am unable to work because..... My husband is my full time carer and when he has to go out one of my children has to supervise and assist.....Can barely move......cannot travel due to server vomiting my husband had to push my 4 mile to get me home the other day all because i had to get off the bus yet again.

My husband and i are now trying conservation and also trying to support the children as they know less than me. Where is the support for people who are housebound?

Where is the support and advice on services and entitlements rather than suffering?

Who can I/We turn to for help with any of these things?

I would be gratefull for any advice


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