Wednesday, 18 September 2013

Living with EB

I was born in 1996 in north wales at Glan Clywd hospital, I weighed 7pounds 6 ounces. I spent the first 8 weeks of my life in SCUBU (Special care baby unit) nurses fought over me as I was the biggest baby there. When I was born my mum and my dad had no idea i had eb my mum had, had a perfect pregnancy. when i was born i had no skin on my left leg, right knee, right foot and right hand as the doctor flicked my hand around as i was born with it behind my head (i didnt find the birth stressful haha) When I was born they all looked shocked there was one male trainee who was present at my birth said it might be eb, but he wasn't a 100%. My mum and dad didn't have  any idea about eb, what it was? What was involved Etc, that's when Jackie denier came from Great Ormond Street hospital to do a skin biopsy, thats when it was confirmed I had RDEB. The beginning of my life I didn't feel any different from any other kids or as I knew I didn't look any different. My mum and dad didn't treat me any different to my older sister, I'd run, jump play just like any other child. My dad did my dressings when I was little my mum used to comfort me and distract me from what my dad was doing, popping blisters and getting dry skin of etc. When I was 7 my parents split up and we lived with my mum, my Nainy and my grandad, my grandad helped my mum do dressing, blisters etc I loved my grandad he was amazing and I could talk to him about anything. As I got older I became more self conscious about my hands, legs I would always keep my hands covered by sitting on them I would always wear trouses even in the summer I wouldn't wear dresses or skirts. I would say my eb is pretty mild I haven't had much trouble with it really, I had a Mickey button fitted when I was 2 too have my medication through it. I have never had  food supplement s through it, but this has become a big set back for me because I am underweight I weigh 25.5kg I am 17 this has a knock on effect on everything and I refuse to take feeds through my Mickey button as I prefer to eat but it's not enough its enough to heel my wounds but not to put on weight. Couple of years ago have had needed a blood transfusion and I throat dilation my 3-4 one in15 years not to bad, I also had a wound on my foot that wouldn't heel so this ment a skin biopsy, this was a big scare for me as I lost my grandad to cancer three years in July, but thankfully the biopsy came back clear and it turned out it was just a stubborn sore that needed a little TLC it is doing really well and is heeled up now :D Ive recently moved over to Guys and St Thomas in London because I'm 17 I'm classed as an adult. I much prefer it there. I don't have ANY pain relief that's for dressing changes or day to day life, I prefer to 'distract' myself from the daily pain I go through, i go on my ipad, i play with my nephew, I also write stories and poems. Now I'm older I do my own dressings little ones not the main ones I pop blisters I try to do as much for myself as much as possible  as I don't like asking my mum because she has so much todo as well as help me she also has diabetes she'll be having a hypo while still doing my dressings. My mum helps me with ALOT of things and there isn't enough love in the hole world or nothing I could buy her to show her how thankful I am for her and how much I love her. I left school in July 2012, since then I have done a CACHE level 2 and I've just started a Level 2 business admin course, along side my GCSES English and maths due to being off in high school I missed most of the work and school didn't make the effort to help me. My goal now is to get my GCSES and continue with my career. Getting into college wasn't easy either! They said I had to have a medical carer even though I was there 2 years prier to CAHCE. My mum has to sit with me at dinner time because college won't let me eat by myself or go out with friends! I've lived with eb for 17 years I no to eat soft foods if my throats bad, I no to wait till the classes have emptied to get up, but college dont listen to this! I'm being treated like a child, this is our current fight, to let college give me my independence!

I'm very independent, I love to help people whether its new parents, teenagers or older people. I try to help people in any way possible I use my eb to help people, I give advice about things I've been through, what have helped etc or even just someone to listen to their 'vents'  I don't let eb stop me, if anything eb makes me push harder and stronger! It won't defeat me or stop me from doing anything! Im hoping to become a person who helps new eb family's learn about dressing etc.

That is all for tonight :p I'm off to do my meds! Yayaya
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