Hayley's Virgin London Marathon 2015 page

Virgin London Marathon 2015 · 26 April 2015 ·
Thank you for visiting my page!
I am amazed and overwhelmed to have secured a place in the VLM2015, raising money for Genetic Disorders UK. I'm not a particularly great or successful runner, but I am very determined and I always swore that I would run the VLM before I was 25. Ok, so I am 'slightly' older than 25, but if I don't run a marathon now, I don't think I ever will.
Genetic Disorders UK is my chosen charity and I'm thrilled to be running for them. The most common genetic disorders include Cystic Fibrosis, Huntingdon's Disease, Down's Syndrome & Muscular Dystrophy. Frightening and life changing illnesses.
Apart from being an amazingly good cause, I also have a personal reason for wanting to support this charity.
My Story
In 2005 I was diagnosed with Cyclical Neutropenia. Cyclical Neutropenia is a disorder which causes recurrent low neutrophils (the white blood cells which fight bacterial infections.) Cyclical Neutropenia is an extremely rare condtion and there are believed to be around only 700 sufferers worldwide. I wasn't born with this condition but unluckily for me, a gene mutated, a one in a million occurrence. This was around the age of 18 as from my A-levels and university years, I had severe mouth ulcers, sinus infections, chest infections, etc. Finally, after several years, a doctor finally suspected that there was more to it and decided that I should have a simple blood test. My low neutrophil count was finally revealed! To be formally diagnosed, I underwent a bone marrow biopsy and had two blood tests every week for two months to confirm that the Neutropenia is Cyclical. I receive fantastic care from the Haematology/Oncology team at Addenbrookes Hospital, who I see every few months. I do spend some time as an inpatient when I am unwell to receive IV anti biotics, otherwise I could die from sepsis - as simple as that. I have been hospitalised over the years with severe infections, but in 2011 I had a nasty bout of food poisoning and then went into acute kidney faliure. I obviously recovered from this but I spent 18 days in Addenbrookes and this was a very frightening experience. I dont want to live my life in a bubble however, (that is quite hard when you have a a career and a three year old daughter) and so I made the choice to start growth hormone injections, similar to those who receive chemotheapy take to keep their immune system functioning. The injections unfortunately, have unpleasant side effects, but I rely on these to keep me well. My condition is so rare however, that whilst I was pregnant with my daughter, my doctors were not sure how she would be affected by the injections and so I had regular scans to ensure that she was growing well. The other big factor in keeping myself well is my amazingly supportive family and friends (especially my husband!) who takes on an awful lot when I am ill or feeling run down and in need of a rest! If there is a cure in my lifetime, then that would be life changing for me.
Bizarrely, lightning also struck twice in our family, as my sister Lynsey has also been diagnosed with a rare disorder - Sjogrens Syndrome.
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