THE BLOG

Growing Up With Sickle Cell

20/06/2017 10:48

Growing up, my life was different. Different from friends, classmates, and family. Pretty much anybody I knew.

I struggled with pain intermittently. With Fatigue. And with chronic ill-health.

My earliest memories are of my family massaging my limbs to ease the pain; the hot water bottles I placed on my joints, which seemed to give some measure of relief; together with countless tablets, which included pain killers and antibiotics.

I was diagnosed with Sickle Cell disease at 11months, a condition of the red blood cells that affects mainly people from African, Caribbean, Middle Eastern and Asian origin. I received my first blood transfusion at 18 months.

Around the age of 9, I developed a problem with my spleen. I needed exchange blood transfusions every month, for about six months, till I finally had my spleen removed.

From secondary school right through university, I was in hospital between 2 - 4 times a year. With sickle cell, you don't always need a transfusion, but sometimes, it's unavoidable, such as during surgery or in severe crises. Aged 24, I needed surgery on my hips to address chronic pain, which required an exchange transfusion.

The psychological and emotional impact of the illness can sometimes be immense. There's a big effect on education, work, and lifestyle. As a child, all you want to do is fit in, be as 'normal' as possible like the other kids. But this was hampered by the presence of this 'extra thing' in my life. It meant the inability to participate in sports and physical exercise to any decent level.

Fortunately for me, I was quite academic, which compensated, though I was still often playing catch-up. It took two years to complete my Master's rather than one; and I've also often agonised with feelings of letting colleagues down when I've needed time off work.

So, what is Sickle Cell?

Sickle Cell is a condition of the red blood cells, which carry oxygen via haemoglobin. In people with sickle cell, our red blood cells are not the normal 'donut' shape; instead, they look crescent-shaped, hence the name sickle.

When these cells carry and deliver oxygen to our tissues, they can often stick together afterwards. This clumping together can result in them becoming stuck in our blood vessels. When this happens, it causes the most excruciating pain, known as crises. (I can liken the pain to someone using a bone crusher or meat grinder, and constantly just grinding your bones - and that's probably an understatement). It leaves you totally paralysed with pain, unable to move, and therefore dependent on loved ones for care and support.

To make matters worse, because these red cells are stuck together, it means your body is no longer receiving the oxygen it requires. This can lead to tissue and organ damage. In some cases, it can also result in death.

Many things can trigger a crises: from changes in the weather (for me, the winter months were particularly difficult as I was more susceptible to infections), to dehydration, physical exertion or fatigue; or just the natural breakdown of the red blood cells (this happens faster than the 120 days for people with normal cells).

Why Give Blood?

At the very least, you're making a difference. At best, you're saving someone's life! That's the level of impact you have.

When patients receive blood transfusions, they need blood closely matched to their own. This is most likely to come from a donor of the same ethnicity. And with sickle cell affecting predominantly those of African and Caribbean decent, it means they need blood from black donors.

Yet only around 1% of current blood donors are black.

There is poor awareness in our community about the need to give blood. People just don't know that so many peoples' lives depend on donated blood.

40,000 more BLACK donors are urgently needed to meet increasing demand.

Though I haven't received blood transfusions in the past 5 years (owing to a change in the treatment I receive), it did make a difference to my health when I needed it, and I'm glad someone was there for me. The question now is, will you be there for someone else?

The choice seems clear. Help a brother (or sister) out.

Save someone's life, whilst going about yours.

Register - www.blood.co.uk

#ImThere

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