Cushing disease is a longlife threatening rare disease it can kill if not diagnosed
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I started to get ill about 10 years ago I was tired all the time my head ached and I put on alot of weight.. I was constantly at the Drs with the headaches but they put it down to depression. Months went on and years soon passed where I just felt weaker and weaker. I stopped going out as I didn't want to see anyone as id gone from a size 10 to 22 but this was still down to depression even though i didn't eat!! They finally sent me for a brain scan which showed nothing I then had a lumber puncher that showed nothing and another brain scan but nothing again.. I was feeling very low as I new this wasn't depression I was 24 at the time and getting really fed up of it all . One day out with a friend I felt my foot break and couldn't walk but I thought this can't be right I'm only walking .. anyhow I got home and told my mum my foot was broken but she didn't think it could be true so off we went to the hospital and there I had a broken foot so I was in plaster for 3 months and was feeling even worse but it was just a broken foot !! Months went on still having constant head aches feeling ill and horrible about myself but again this was just depression!! I came home one day and fancied a toblerone so had a piece and next thing I new i couldn't breath I told my mum get me to the hospital im going to die and she thought I was joking I'd ate toblerone before and never had a problem but I was adamant I was going to die!! So off we went at this point she new I was serious I couldn't breathe I was purple and swelled.. the hospital got me in right away and saved my life I had a life threatening reaction to the nut in it ... I ended up bring in hospital for a week and they ran all kind of tests on me no brain scans but more blood taking and urine samples... I remember the Dr saying there was something up with my urine and he thought it was Cushings to this I had no idea what it was but he said that he would get me an appointment at Walton brain hospital. My appointment came through I had my scan and got a call to go back the room was full of drs and nurses I was with my mum when they said the words tumor I fell to the floor and thought this couldn't be happening to me but it was . It was called Cushings disease a tumor the size of a pea on the purity gland and it needed to be taken out asap. Soon my appointment came for my first brain surgery six long hours procedure which would save my life !! Of course it didn't work so My 2nd brain surgery was due and this didn't work they told me they couldn't operate the 3rd time so I would have to habe radiotherapy so I prepared myself to get ready and off I went to Walton and they said that they was going to operate one last time I felt my whole life had been torn apart and now I was really depressed. So the third operation came they was adamant that this would be it that I would be free from the tumor and my life would return to normal. Did it happen ... no it failed once again so yes I was having radiotherapy this time ! I had 5 long weeks of radiotherapy it was tiring I lost my job and couldn't go to work or have a job to go to. But I new this radiotherapy would finally work they assured me it would. Clatterbridge where great and the nurses where lovely. I had to wait 3 months after the radiotherapy to see if it worked. It did it did so I was over the moon then they told me the bad news ! It had burnt all my growth hormone away my sex hormones and thyroid . So at 30 I was on my menopause I was given lessons in how to inject growth hormone back into my system which I have to do so everynight I take hrt and on tablets for life to keep me alive.. I can't go back to work as I am always ill catching one thing or another i just want people to know and understand about Cushings disease. That it can kill if untreated it is one in a million tumor it is a rare disease and it is life threatening . I want to make everyone aware of the disease and what it can do. I don't think people see us as ill and expect us to work I think we should get accepted as having a disability
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