Managing Genetic Haemochromatosis Through Blood Donation: Opportunities and Challenges in Aberystwyth
Genetic Haemochromatosis (GH) patient shares journey from diagnosis to becoming a blood donor for treatment. Limited donation sessions in Aberystwyth pose challenges for induction and maintenance phases. Request for additional sessions in summer to support GH patients.
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BBC Cymru BBC Cymru Fyw Fyw news item news item
Genetic Test showed I was C282Y homozygous for the HFE gene (90% of those that need treatment for Genetic Haemochromatosis have this genetic mutation) Treatment started in October 2021 - weekly venesections at Bronglais Hospital Blood Test in June 2021 showed Serum Ferritin level of 1050 g L-1 (normal levels < 300) I reached the maintenance phase in April 2022 (Maintenance is reached when Ferritin < 50 g L-1 , Tsat < 50%) Transferrin Saturation (Tsat) of 66% (normal levels < 45%) After reaching maintenance, I was advised to register as a blood donor and donate up to four times a year (dependent on Ferritin and TSat levels)
Medical referral form to become Medical referral form to become a WBS Blood Donor a WBS Blood Donor
I am now a I am now a blood donor blood donor You can donate blood with genetic haemochromatosis if you Are nearing the end of your induction phase or are in the maintenance phase Are having your iron levels regularly monitored by your GP or specialist team Are generally fit and well Are generally fit and well
GH blood donation opportunities and challenges GH blood donation opportunities and challenges Aberystwyth is geographically isolated so the availability of donation sessions within the town is limited to five times a year. This will make it difficult for those wanting to donate during the induction phase of their treatment. 80% of treated Genetic Haemochromatosis patients in the maintenance phase have their blood taken four times a year. Currently, there are no donation sessions scheduled between mid-May and mid- September in Aberystwyth or the surrounding area. An additional session in around July would be greatly appreciated.
