- HFE hereditary haemochromatosis
- Interviews
Keetje's interview
How did all start?
It started with me getting my 2nd Thrombosis in 2019. After I started with anticoagulants I didn't start to feel better. i was exhausted all of the time and out of breath when i climbed a stairs, and it became worse and worse. At 1 point I started to work less because I was so exhausted I could sleep while I was driving my car. Because of my thrombosis I was still seeing a specialist at the hospital and he decided to check my iron levels. That's when I found out I had HFE. And it changed my life.
Do you already have a diagnosis? How long did it take you to get it?
I got my diagnosis within 4 months after I had my thrombosis in February 2019. But I already had complaints long before.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I'm having bloodlettings to get rid of all of the iron in my body.
What has been the most useful thing for you so far?
Getting the diagnosis and finally realizing there was something serious wrong with my body. Being extremely tired is such a vague symptom. I felt I had to defend myself for being tired all of the time.
What have been your biggest difficulties?
Accepting I'm sick. I also hate that word "sick".
How has your social and family environment reacted? Have your social or family relationships changed?
Some people around me just don't get it that I'm tired all of the time. Even now my iron levels are lower the tiredness just doesn't go away. Sometimes at the weekend I want to take a nap in the afternoon because otherwise I will be like a dead bird in the evening. Half asleep on the couch. But then people comment "you're only 47, naps are for old people". It makes me angry. How many times do I have to explain I'm not well.
What things have you stopped doing?
I still do everything as long as I can keep on doing them. That's the kind of person I am. I keep on going and going until my energy is gone.
What do you think about the future?
I'm sometimes worried about the future. The joints in my knees and hips are already playing up, and my tiredness doesn't go away. I'm afraid my job will be at risk in the future..
So far, which years have been the best years in your life? What have you done during them?
When I was 25 I've been to Israel for 6 months. I stayed/worked in a Kibbutz. That was the best year of my life.
What would you like to do if you didn’t have your condition?
Exercise more, make longer walks. I got a dog so I am active walking my dog. But before I could walk for hours, make long trips. 1 hour walks are the longest at this moment.
If you had to describe your life in a sentence, what would it be?
Challenging
Finally, what advice would you give to a person in a similar situation?
Listen to your body. Join a group/community (online) for people who are in the same situation. And try to accept that your body isn't working as you want it to work.
