Lifestyle

Let’s Talk About Alpha Thalassemia

Alpha Thalassemia HbH disease

Last week I wrote about how to stay focused on your resolutions. I also decided to bring you with me on my journey to stick to mine. So here I am committing to my health starting by telling you about my condition.

‘A sound mind in a sound body’ by Roman poet Juvenal

Two years and a half ago, I discovered I had alpha thalassemia. A condition affecting my hemoglobin making my red cells less abundant and smaller than the norm. What does it mean on a daily basis? I’m constantly anemic, easily out of breath and feel cold all the time. It’s a condition I have since I’m born but that only started manifesting itself two years and a half ago. I’ve always had really low iron level but didn’t bother with it because doctors often mistake it for anemia. No one had the idea it was alpha thalassemia because first it’s a disease specific to certain areas in the world (Africa, Middle East, South East Asia) and secondly it is not necessarly known by doctors. At least that’s the conclusion I came to after years of living abroad.

It was a German doctor who took me seriously after I told her all my symptoms. I have to emphasize that because there’s always someone thinking I am just plain lazy or a liar. Even close friends. No one can know better than myself how I feel, so I often feel frustrated and lonely. My fatigue is the kind of tiredness leaving me worn out even after eight to ten hours of sleep. It’s like a restless sleep where sleeping doesn’t help me recharge my battery. I just feel extremely weak. It is like that at least one to two weeks a month. That’s the time of my menstrual process during which the symptoms of thalassemia are stronger than usual. Then when my periods stop, I literally feel as if I was given back my body.

When the doctor diagnosed my thalassemia I was about to leave Germany for the UK. And little did I know this change would impact so much on my health. In Munich, my life was peaceful and occurences of thalassemia were due to working overtime. Here in London, it’s mainly because the city is restless and let’s admit it Londoners don’t have the best lifestyle. Periods or not, my body suffered from the change,though now it’s better because I’ve learned to listen to it. Meaning, I sleep between 10.00 and 11.30 pm (at the latest), take vitamins and above all cook for myself.

There’s no treatment for my type of alpha thalassemia and to be honest I feel cheated. I know it’s a condition, it’s how I was born but I don’t want it to take over my life. I want to be able to do my yoga routine, blog, feeling energized while at work, well simply enjoy my life. Though my type of alpha thalassemia is not life thereatening it IS a daily hindrance hence why I’m prioritising my health over everything this year.

Lately I’ve been looking for information about alpha thalassemia. And not only couldn’t I find anything related to women on their periods; but there also was nothing about what someone with thalassemia should eat. The former stayed in my mind because during the menstrual cycle red cells are literally dying which amplifies the condition; while for the latter, I think food is crucial to get all the nutrients the body needs considering alpha thalassemia can weaken the bones and stimulate infections. Now I’m not a doctor but as someone living with the condition I NEED to know about it and HAVE TO find ways to prevent it to take over my life.

 

Picture by Frank Busch

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