Story
I am raising money for the Haemochromatosis Society and below my daughter Katharine explains the reason why..
As many of my friends and family know, just before my 20th birthday I was diagnosed with Haemochromatosis (iron overload), an inherited genetic condition, that has changed my life in more ways than one, including regular venesection (giving blood!).
I was in my second year of University when I began fainting frequently, had severe stomach pains, my hair was falling out and I was constantly exhausted. Vague symptoms indicating lots of possible causes and most GP’s seeing these symptoms will not consider haemochromatosis, as many have little knowledge of the condition.
Fortunately, my amazing GP decided to test for the amount of iron stored in my blood – and it was way, way too high. Genetic tests showed I had GH (genetic haemochromatosis), which means I absorb
too much iron from food, resulting in too much iron being stored in my blood, which the body does not cope with well. Once the blood is saturated with iron it can accumulate elsewhere (liver, heart, joints), which is dangerous.
Everyone knows about being anaemic, yet it is not as well known how
dangerous it is to have too much iron in your body.
It can cause: chronic fatigue, stomach pains, heart problems, liver disorders,IBS, arthritis/joint pains, liver cancer, pancreatic cancer etc and I already suffer from half of these problems.
However, I am one of the lucky ones as I was diagnosed at a young age
which is an opportunity to limit damage. Even rarer to be diagnosed so young as neither of my parents suffer from the condition, they are just carriers of this gene. My brother Leslie is also just a carrier. It is the delay in diagnosis that allows the condition to cause massive damage to major organs. Unfortunately awareness of this condition, even amongst health professionals, is very limited. Hence the importance of the work of the Haemochromatosis Society.
I also have very poor eyesight, (Bull’s-eye Macular Dystrophy) which led
me to register as Legally Partially Sighted this year. Although there is no proof (yet) that these conditions are linked, we think they may be..
The Society is doing amazing things; it is involved in education, offers
support & advice, raising awareness and research. Raising the profile of the condition, both with the public & health professionals is vital. It is estimated that approx 1 in 200 people in the UK are carriers of this gene.
My Mum Mary has volunteered to raise funds by joining a team of 15 planning to climb Ben Nevis in August this year, all who either suffer from the condition or have family members affected by it.
We need to raise as much money as possible for our charity’s work, so contributions, no matter how small, will be greatly appreciated.Can I also ask people to consider looking at the website to learn about this condition – you may help someone in the future!
Thank you!
Mary, Katharine & Leslie