hey there
i am a carrier, but not a sufferer- only have one of the gene's.
My mum and sis have both, but do not suffer from it yet.
My nan had it and it was discovered when she was in her 70's. She used to have to let blood every 4-6 weeks. In the end as she got older - she didnt have it done anymore, and actually her iron count started to go backwards as she got to her mid 80's

she died last friday aged 90 years- so it didnt really impact her life that much.
Its is a very treatable condition, esp for women who get rid of the iron whilst they are menstruating all by ourselves. I havent bothered to get my kids tested as my DH would have to have both genes for them to have a chance to suffer from it, but they could be carriers. Will tell them when they get older, but not concerned now.
hope this helps