Strong family history

May 2, 2016


I was diagnosed three years ago after both my parents tested positive for the HHC genes. My Dad is a C282Y carrier but my mum is Homozygous with 2 copies of the H63D gene, which was sadly diagnosed far too late. Both my sister and myself are Compound Heterozygous because we each have a C282Y and H63D gene. I have had 18 venesections in 3 years but finally have my iron and ferritin under control thanks to my haematologist ... but it's been a very long and frustrating road to this point. My sister, despite being 3 years older has shown none of the symptoms I've had. I'm now classified as a therapeutic donor at Red Cross and donate blood every 3 months or so, which helps me immensely. Good luck to others who are starting or already on your journeys. We need so much more awareness and mandatory early testing/diagnosis. Even though it's very inconvenient, I'm glad I found out early and can manage it before it causes permanent damage to any organs.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


HFE hereditary haemochromatosis advice

Which advice would you give to someone who has just been diagnosed wit...

HFE hereditary haemochromatosis sports

Is it advisable to do exercise when affected by HFE hereditary haemoch...

HFE hereditary haemochromatosis cure

Does HFE hereditary haemochromatosis have a cure?

Natural treatment of HFE hereditary haemochromatosis

Is there any natural treatment for HFE hereditary haemochromatosis?

HFE hereditary haemochromatosis and depression

HFE hereditary haemochromatosis and depression

HFE hereditary haemochromatosis causes

Which are the causes of HFE hereditary haemochromatosis?

HFE hereditary haemochromatosis symptoms

Which are the symptoms of HFE hereditary haemochromatosis?

Is HFE hereditary haemochromatosis contagious?

Is HFE hereditary haemochromatosis contagious?