- HFE hereditary haemochromatosis
- Interviews
Dogtags007's interview
How did all start?
New Dr wondered why I’d been on iron tablets for ten years so checked my iron levels and when they got those results he explained it may be a rare disease but he didn’t think it would be that, it was that
Do you already have a diagnosis? How long did it take you to get it?
It all happened quite quickly, within a few months, but it took quite a long time to start the chelation therapy as it was during lockdown and needed several Drs signatures
For what medical specialties have you been treated? What has been the most useful specialty for your?
Only been seen by Gastro as when they tried to pass me over to Haematology they didn’t want to know so was passed back to Gastro
What has been the most useful thing for you so far?
Most of the stuff I’ve learned about this has been from Face Book group Haemochromatosis family. Learning what the ferritin levels should be and the transferrin saturation level as i think that is quite important
What have been your biggest difficulties?
Having medical professionals who don’t tell you anything is so frustrating
How has your social and family environment reacted? Have your social or family relationships changed?
It hasn’t really changed anything as i just get on with things and don’t let it interfere in my life. I do feel alone as I don’t know of anyone else who is having the same treatment as me
What things have you stopped doing?
I haven’t stopped doing anything
What do you think about the future?
It scares me as I don’t just have this and it seems like everything is going wrong all at once
So far, which years have been the best years in your life? What have you done during them?
I think my life has got better as I’ve got older, 12 years ago we had a baby girl, the pregnancy was a nightmare due to MRSA Sepsis but I’m still here and would do it all again. We have been to Spain on holiday 2years ago had to cancel last years holiday and this year we’re staying in the UK but we are hoping to get abroad again
What would you like to do if you didn’t have your condition?
The diabetes put paid to my dream job but the Haemochromatosis hasn’t changed anything for me
If you had to describe your life in a sentence, what would it be?
Illness has stopped me doing a lot of things in my lifetime but I’ve still got a life to enjoy things.
Finally, what advice would you give to a person in a similar situation?
Don’t panic or worry, i always look at it as it could be a damn site worse and you will get through this and be able to have a life while having treatment.
