Sufferers in Silence


Blood cells

Thalassemia: one of the world’s most commonly inherited diseases, yet one of the most neglected. Its amazing clinical diversity accounts for this, yet it is this diversity that ironically makes it the most neglected. One person’s Thalassemia is different to another’s. Just because two people have the same type of Thalassemia does not mean their symptoms are the same.

I inherited Beta Thalassemia Trait from my father who until I was born was not even aware he was a carrier. For most of my life I never gave Thalassemia a second thought. That is until I became pregnant. For over two years it has become a permanent existence in not only my life but also that of my husband and my daughter.

I should need minimal medical attention. The particular form of Thalassemia that I inherited is what is often regarded by many as the less dominant. Although that may be true, I (thankfully) do not require regular blood transfusions and the physical representation of the disease extends mostly only to the paleness of my skin, however for me Thalassemia Trait is debilitating enough to affect my life in an immense way. In fact I have been told by a leading Thalassemia expert that my symptoms extend to Thalassemia Intermedia, which requires irregular blood transfusions yet on paper my body shows only Thalassemia Trait indicators.

Many diseases are treated in accordance with the sufferer’s lifestyle but that does not seem to be the case with Thalassemia. Since having my daughter I have held a much more active lifestyle and it is because of this that Thalassemia has become more central in my life. As an example, I am continually breathless and at times the pain in my chest from my body trying to regulate my breathing stops me short. My daughter now sometimes breathes as if she is breathless herself so she can be like her Mummy. I feel faint even blowing her bubbles. I now suffer from pain in my fingers, to the point again when I have to stop and wait for the pain to subside. Not the best thing for a writer.  The pain has improved since I started taking daily Folic Acid supplements but there are days when the pain breaks through. I very often feel cold even in the heat of summer due to bad blood circulation. The tiredness, well that would be another blog post on its own. There are days I have to leave the house in a mess simply because I physically cannot bring myself to pick up a duster, hoover or iron.

When people ask me what I do for a living and discover I am a stay at home mother they presume I sit down with my feet up all day and occasionally play with a few toys. Doctors are no different. If I told people I was a sportswoman I am 100% sure I would be treated differently. Why?

I have visited the doctor and haematologist a number of times since my daughter’s birth with the same ailments yet have walked away with nothing but “it’s just something you have to live with” and the only remedy being to sleep early. No easy feat when you are a mother, housewife, and also attempting to carve a whole new career. None of the jobs I now hold I can shut the door on. There is no out of office, no holidays and no sick pay.

The medical field may claim they have no remedies for my symptoms but they are real, they are debilitating and quite frankly made worse by the lack of respect given. So today on World Thalassemia Day, give a thought to us Thalassemia Trait carriers. Those who are forced to suffer in silence.

RWilliamsPerson

Opening image: De Montfort University                                                                                                 
Closing image: Motivational Quotes
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2 Comments (+add yours?)

  1. Rubyslippers
    May 08, 2015 @ 21:04:27

    It must be a constant drain. I hope it doens’t get any worse and it becomes something you find easier to live with as you adjust to coping with it. Hopefully a form of medication will be discovered to ease the symptoms in the near future!! xx

    Reply

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