Health: Living with Alpha Thalassemia Trait

Way back in 2010 when I was pregnant with my son, I had the usual barrage of tests they give to pregnant ladies. I wasn’t really expecting anything to flash up in the results and I think my Doctor was as surprised as me to find that I had Alpha Thalassemia Trait, a genetic blood disorder.

My husband and I were quickly thrown onto a conveyor belt of further tests and genetic counselling. Something neither of us were expecting nor were in any way prepared for. Being pregnant and having a baby is scary enough, but when you find out there’s a chance of something unthinkable happening, your world turns upside down.

On its own my Alpha Thalassemia Trait is a bit like having anaemia. I’m a bit tired most of the time. I always have been. I remember being a teenager and family members telling me how lazy I was and how I didn’t have any get up and go. It wasn’t that I was lazy, I just had no energy at all. Thalassemia comes in various forms, some are far more serious than others and some people with other versions of the disorder can have terrible health problems. Thankfully Alpha Thalassemia Trait has pretty low-level symptoms.

As an adult, I learned to cope and manage my low-level exhaustion and factored those symptoms into my lifestyle. I can’t actually nap unless I’m ill, but rest periods are essential, as are lie-ins a couple of times a week. Caffeine is my friend, it gives me false energy and a little pep up when I need a boost to get me through. I work from home now and as much as I can I work when I’m energised and rest when I am not.

When I was first got pregnant in the days before I knew the reason why I was fatigued all the time, I was absolutely shattered. I’d do a days work, come home and get straight into bed. My husband would wake me up to give me a meal in bed and I’d fall asleep again. He’d wake me up later to make sure I had a drink and then leave me to sleep until morning. For a few weeks I thought I was seriously ill. I was just pregnant.

In terms of my health during my pregnancy it didn’t really affect me. I was advised to try to eat more iron rich foods and to rest when I could. I suspect that’s advice given to pregnant women regardless of their thalassemia status.

What I did find stressful, and it was something which definitely contributed to the deterioration of my mental health after my son was born, was the genetic counselling. It was supposed to educate us about the risks of having two parents with the disease, which is helpful, but at 18 weeks pregnant I was faced with the possibility that my baby could die if my husband also had this genetic anomaly. Until the test results came through I could not be reassured.

This dark cloud hung heavily over us while we waited for his test results to come back. My husband is half Armenian and thalassemia is prevalent in Mediterranean, South Asian, Southeast Asian and Middle Eastern counties. I knew this was a concern to the medical team treating me. It was a truly horrible time in our lives. The two weeks of waiting were torture. Thankfully his results came back absolutely clear and we were discharged from the Thalassemia Service and told our baby would be ok.

Alpha Thalassemia Trait is a strange condition. I have it but there’s no treatment for my minor version of it. There’s not a lot I can do to make myself better, I just have to factor in self-care where I can. The concern is that I will have passed my genetic anomaly on to my son. If I have then he will need to be cautious should he ever want children of his own. If he has it, then his partner will need to be tested to make sure that together they can have healthy babies of their own.

The test for Thalassemia is really simple, it’s a quick blood test. I’d never heard of the disease before I knew I was a carrier. It’s not infectious, you can’t catch it from me, not unless I give birth to you, which is unlikely. If you’re worried you may be a carrier it’s worth speaking to your GP and requesting a test, especially if you’re thinking of having a baby.

Health: Living with Alpha Thalassemia Trait

You can find out more about Alpha Thalassemia Trait by visiting this website.

This blog post does not constitute medical advice. I am just sharing my experience of  Alpha Thalassemia Trait.