“Hello, to all who know me and all who don’t. I have designed this website to tell the world about myself, and a big part of me is that I live with a condition called Congenital Erythropoietic Porphyria. It is a very rare disease, little more than two-hundred people in the world live with this condition. Basically, I have an allergy to sunlight. It affects my skin and causes blisters to appear on light exposed skin, which can cause scarring. I have suffered with it from birth. Nowadays, babies born with C.E.P. are given a Bone Marrow Transplant, which is the best long term treatment for it. I had a Bone Marrow Transplant in 1999 but it failed (please read more of My History to find out more on that). I have blood transfusions every two weeks (they last six hours). I’m on a constant infusion of medication called Desferrioxamine, which reduces the amount of iron in my body (a side effect of all the transfusions I require). Away from the aspect of my illness, I live a relatively normal life in Leeds, with my mum, step-dad and dog! I have a sister, Haley. And she has a baby, my nephew, Leo. I’m probably what you’d consider a geek, simply because I invest more time in my hobbies (Filmmaking, Video Editing, Writing and Music) rather than having a social life, but I’m slowly working on coming out of my closet… literally! I never thought I’d be able to say that, but my sexuality is a relatively insignificant part of my life that all my family have been amazingly accepting of. It makes me so proud and thankful everyday, despite living with an illness. I actually consider myself lucky to have this prospective on life, I just try hard not to let my disability affect my day-to-day life.”
2nd June, 1986: The day I was born. My mum and dad didn’t know about my illness yet.
1987: My teeth were coming through a different colour and I was getting blisters. My mum and dad took me to the doctors. They gave me different medication, mainly for chickenpox. At 10 Month old. My mum and dad took me into hospital. A doctor who saw me for the first time recognised my symptoms as a rare illness. Tests were taken and after 6 weeks in isolation I was diagnosed with Congenital Erythropoietic Porphyria. All my mum was told was to keep me out of the sun. I’d have an enlarged spleen and liver and I would probably live to be 10 years old.
1990: I was currently only having sun cream as a treatment. When I went on holiday in July, I fell ill and had to be taken into hospital. I had had too much exposure to the sun. At this age I didn’t know much except the sun-light burnt me. My mum and Dad had to stay indoors with me. I had my first blood transfusion.
1991: Before I started school the doctors decided that I could benefit socially from having a porcelain coating on my front teeth to make them look white. As this was on my milk teeth eventually they were replaced by my adult teeth.
Bonus 1991 Video: Blood Transfusion, 5th Birthday & “White” Teeth.
1992 – 1994: I broke my legs several times between these years. I was diagnosed with Osteoporosis. I had also started to have blood transfusions every 6 weeks now.
1997: I went into hospital for two weeks because something was wrong with my kidneys. after having a biopsy I found out that I had nephrotic syndrome which is a lack of protein. I had to have special energy food and drinks.
12th October, 1998: I started seeing a new doctor called Sally Kinsey. She and I thought it was best if I had a Hickman Line put in my chest. This is a small tube that connects to the vain in my neck so that when they take and give blood, they don’t have to insert a canuler into my skin. With this on, I could have a medication called Desferrioxamine which would reduce the amount of Iron in my body. I also had this done to make it easier when I have my Bone Marrow Transplant.
16th March, 1999: I went into hospital for two months to have my Bone Marrow Transplant. I had chemotherapy and then I had my Bone Marrow which was donated by my sister Haley. I stayed in quarantine until the end of May.
2nd June, 1999: I celebrated my Thirteenth birthday at Skipsea. I could only go for a day because I was still having tablets to recover from my Bone Marrow Transplant.
October 1999: The bone marrow transplant had failed. but it did cure me of my nephrotic syndrome. I wasn’t bothered, as I said in my diary I like having something special about me. I had gone back to school in September. A lot of things had changed and it was hard to get back into a routine. I was having my Transfusions about every month now. I auditioned for a play that will be performed at the Millennium Dome and I got chosen. A charity company paid for me and my family to see Steps in concert and I actually got to meet them. They were very nice.
May 2000: After getting bullied at school. My mum decided to take me out and I went to an acting school that my friends from the ‘Our Town’ Millennium Dome Production go to. I went to Skipsea in May but I had a Five hour nosebleed and I had to be taken to a hospital in Hull. It didn’t ruin my holiday though. My longest ever nosebleed was Seven hours. I was having transfusions about every three weeks and I continued to have the Desferrioxamine every week.
September 2000: I had my nose cauterised to prevent me from having nosebleeds. This worked for about two months!
November 2000: I had started to get very sharp pains in my back. These got really bad. I had to take Dihydrocodeine regularly.
December 2000: Over winter the pain got worse. I couldn’t deal with it and went into depression. I had stopped going to school because I couldn’t even walk upstairs. My mum and Steve really helped me get through it.
March 2001: After seeing a bone specialist, I found out the Osteoporosis had spread to my spine. Luckily there was a medication called Permidrinate which I had over three days every three months. This helped the pain go away. I started school again and my life was back on track.
April 2001: Went to Sheffield to have a bone biopsy. I started my Permidrinate.
September 2001: My mum and Steve got married on the 15th. The 9/11 terrorist attacks really affected me. I couldn’t believe that there was that much evil in the world.
Dec 2001: Extract from my Diary: “Have I told you about a girl named Amanda Bynes? She’s the funniest, prettiest and best damn actress around. And the best bit? She’s 15! She was born on April 3rd and likes No Doubt. I found this out at an official website, with updates from herself. I emailed her today but I’m not very good with e-mail. I hope I’ll meet her one day or at least get in contact with her.” (Dedicated to visitors of Amanda Bynes UK)
May 2002: I fall ill with an infection in my Hickman Line. I stay in hospital for a week. I am also taking my GCSE’s at the same time.
August 2002: I fall ill again only this time I am rushed into intensive care because I was unknowingly allergic to the treatment drug vancomycin. My line is removed but it takes a while for me to recover. Whilst I have my infection I also get pneumonia. I receive my GCSE results whilst in intensive care. I got two B’s and three C’s. I also got a D, three E’s and an F.
Sept/Oct 2002: I get a new Hickman line put in. My Transfusions are as close together as two weeks now. I have to take antibiotics because I get a cold and my blood count gets low. I start 6th Form and I get a home PC.
July/September 2003: I finish up Year 12 at Sixth Form and begin my work experience at a Web and Graphic Design Company. In August I get my A/S Level Results. Film Studies: A; Media Studies: D; General Studies: U. I’m happy about my A and D and my U doesn’t really bother as General Studies was the worst lesson ever. DON’T TAKE IT!! I go on antibiotics because I get 2 infections in my left index finger. My finger is diagnosed with Osteo-Mialitus. In September it’s full steam ahead as I start Year 13. I’m of school Week Commencing 29 September because of cold. Please refer to the blog archives for further history.
Bonus 2004 Video: ITV Calendar News: Party in the Park (July).
Bonus 2007 Video: BBC Look North: Emma Maltby Trust Interview (January).