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.

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