Patients’ stories


´´Today I was asked to answer a survey and participate in an interview about how is it like to live with Beta Thalassaemia. It is so exciting and fun that my journey with the disease can reach out to people that are interested so they can read it!

So, I completed the online survey that they sent my way. Later the journalist will check-in with me before the interview with the questions in the survey.

When I looked into the questions, both my mom and I started to think a little…

One question was « How do you see your future or your children’s future when it comes to the disease? »

It made me think about how things will be for my daughter…

The disease I have is hereditary, and there is a 50% chance that my daughter will inherit it. I just hope that the day she comes into her teens, and if she carries the same illness as I, that public awareness is better than what it is now. That she will get the help and treatment needed to enable her to live well, to feel good and healthy.

So that she does not go through the same experience as I did while growing up and during my teens.

Every time I fainted, I was driven by ambulance to the hospital because someone found me unconscious on the street. I had difficulties breathing and felt pressure on my chest. I would feel very weak, but what I was always just told “Your blood work results are not so good, especially the blood count… BUT you have to drink better… You have to eat better… You are malnourished… You have panic anxiety.”

But was it really panic anxiety? Was I really malnourished? Or was it as it is now, where my blood count is so bad that I need treatment?

Maybe all along I had needed treatment since then, and not just now when I am carrying my child. The support and help I need would have been in place already, from when I first sought it at the very beginning. But even today, even though I carry a child, it feels like the help I need is still so far away and out of my reach.

I keep fainting. I keep falling. I feel bad every day and I am always weak. But I am able to get now is a sick leave that will help me. But a sick leave doesn’t help my low blood count. It helps me to rest.

But one thing is for sure… I will not stop fighting! I refuse to keep quiet!

I will continue to spread awareness about Thalassaemia, and hope that in a few years it will be different.

And should my daughter inherit this illness… I will be there for her for her every step on the way and will do everything in my power to get her the help she may need.´´


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