My Story

My name is Charisse Howard-Jones. I am 29 years old and I was diagnosed with Fanconi Anaemia at the age of 7 years old. Fanconi Anaemia is a rare, autosomal, recessive disorder (both parents must have the gene). It is most often characterised by bone marrow failure - meaning that the marrow is unable to make the right amount of platelets, Red blood cells and White blood cells. Fanconi Anaemia is also strongly associated with the onset of leukemia and other types of cancers like head and neck cancer as well as a range of birth defects. I have annual bone marrow biopsies to watch out for symptoms of further bone marrow failure and the onset of leukemia.

I was diagnosed after the initial onset of bone marrow failure. First symptom noticed to investigate my health was instantaneous bleeding and bruising due to inadequate platelet count. My bone marrow failure was stabalised through the administration of the steriods Oxymethalone and Prednisolone which helped stimulate my marrow and therefore produce adequate blood cells.

I am currently married and have a beautiful 4 1/2 year old son named Isaac. I am no longer on the oxymethalone as I ceased it due to its affects that it can have on a child in the womb. My blood counts are stable and I have been relatively well all through my life. I do have immunoglobulin infusions (IgG) every 6 weeks to maintain my IgG levels so that I remain well. I suffer from low immunoglobulin G levels and as a result, catch colds easily. However, with the infusions, I am as fit as a fiddle and have only started them about 8 months ago.

I am a born-again Christian and love Jesus with all my heart. Even though life has been tough at times, I love it to the fullest. I have a great family - a wonderful husband and son. Hope you enjoy my new website!!