Wednesday, 14 September 2011

FD & me

A little about fiborus Dysplasia (I've never managed to spell it right)

This condition effects your bones and can effect any bone in your body.
Many web sites tell you that its not something that you inherit but my specialist says it is. Both parents have to carry the abnormality (not ever suffering the problem theirselves) and pass it on to the child. I  am an identicle twin and it is not known why she isn't affected.

Basically what happens is your bone when it is forming goes through 3 stages to get to bone and mine stayed at the first stage. Fiborus tissue: I have it in my 8th vertebrae in my spine.

I was only officila diagnosed this year after under going a biopsy and having bone cement placed in my back as my bone had crushed so much I was getting too close to becoming paralysed than I was comfortable with.

Although only diagnosed this year I started to suffer in my teens and at the age of 17 my life came to a stop when the doctors told me it was no longer safe for me to attend college and complete my course and nor was I allowed to work as they were not sure on the stability of my spine.

This didn't bother me to start in fact I thought it was great not having to do anything other than what I wanted and within limits. However 10 years on I am fed up.

I have a very small social life and a few friends as I joined the Womens Institute just to get me out the house but this has provided me with lots of fun things to do. I go to craft clubs out to lunches and coffee mornings at least once a month.

I didn't waste my time just sitting at home I did study with the open university doing many different course and having some success. I also met my husband during one of my courses.

Although I have had the operation to strengthen my spine I am still unable to work as I am still having treatment, however the doctors are hopeful that I will be able to get a job in the near future. I am though no longer at the moment under threat of paralysation which is a big relief.

FD doesn't just effect one particular bone you can get it in many bones in your body at the same time. So although I have had treatment it can still get worse or I could get more. Because of this risk I will now have to go to the hospital twice a year for the next twenty years or so to have an x ray and see the specialist to check that I haven't got any more nor the one I have has turned cancerous as this is a high risk.

So where am I now? I have lots of things I am not allowed to do for the rest of my life some which will not be a problem and some that I may struggle with throughout my life.

I am not allowed to ever do a sky dive or bungee jump (not a problem, I hate heights), I cant ever lift a bag of compost (fine by me), I am not allowed to carry anything heavier than 4pints of milk (difficult I am a woman who likes to shop) I can only sit in one positon for twenty mins then I have to walk around, I am not allowed to hoover or do the ironing (this is hard). If I make my bed I am not allowed to hang my washing out the same day, (don't know why).

To get a job I can only work 2 hours a day for the first 6 months and then I can go to half a day for 6 months before going to one full day and the rest half days a week for 6 months then I can go full time. This is a long process to return to work and I am not sure how achievable it will be. Another reason I have the knitting.

When I do get a job I have been told I can not work in a supermarket or DIY store but try and go for something that is flexible and I can sit down to if possible so a receptioist job would be ideal.

Any way I think that covers most of it and I have gone on for a while and I need to go for a little walk as I am suffering with my back at the moment I am having a flare up and I have pulled a muscle lower down which isn't helping.


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