Sickle cell awareness day

Abrantie's 9th birthday

Abrantie's 9th birthday

Ok, ok, I’m a bit late with it, but I wanted to take note of the very first ever World Sickle Cell Awareness Day on 19 June and Hey! I’m I’m only a week late.

The day has come about as a result of a resolution passed at the United Nations last December that recognised sickle cell as a public health problem and called for a day to be set aside each year to raise awareness of the condition internationally. The resolution was proposed by the Delegation of the Republic of Congo Brazzaville and co-sponsored by 24 Member States. You can read more about it in the 19 June UN Press Release.

As I’ve mentioned before both AM’s Dad and his half brother Abrantie have a variant of sickle cell that’s severe enough to affect their lives in a major way.  We don’t know anyone else in Australia who has this condition, although there must be someone, especially since African migration has increased. So as far as I can tell there was absolutely no awareness of World Sickle Cell Awareness Day in Australia.  So this blog post is my two cents worth.

And here’s a quick update on my latest foray into pain management with Abrantie. It was a few weeks ago now that he started to feel pain on the way home from an afternoon in the park playing basketball with me and his brother 50 Cedis and some friends.  (50 Cedis, BTW, is very pleased with his blog name but somewhat disappointed that my whole blog is not about him).

We tried something new. The last time it happened, I’d got him to vocalise the pain – make a lot of noise: “Ow, ow, ow!” This time we tried some righteous anger, with me giving examples of what he could yell at his pain:  ‘How dare you!’ ‘Get out of my life’, ‘I’m not putting up with you any more!’ He did a bit of yelling himself but mostly my no-holds-barred attack on pain got both him and 50 Cedis laughing and laughing all the way home. Which I think is a good thing because it got his attention off the pain and suffering and isolation that comes with sickle cell. I won’t claim it’s a miracle cure, but he got to feel powerful,  not a victim.

However it’s the second time he’s had pain after late afternoon basketball at this cooler time of year, so I guess we’d better not do that anymore, and keep it for the middle of a sunny day. 😦

While I was looking around the web for info on Sickle Cell Awareness Day I came across an interesting blog by a ’28 year old, fabulous and feisty female’ who also defies sickle cell and won’t tolerate being a victim. The title says it all:  Sickle Cell can kiss my A**!!! She is fabulous too. It’s a great blog with lots of interesting info and insights on living with the condition.  She’s also done a short post on her swimming experience – an issue close to my heart as you’ll know if you’ve read my previous posts on this.

And that inspired me to do a search on ‘sickle cell wetsuit’, cos I wanted to know if they are useful. I managed to find one post,  about five year old Atreyu, who has a wetsuit and can swim for up to 30 minutes at a time.  There’s no more info about swimming than that, but still, it’s hopeful. And the article has some good info about kids and sickle cell.

To end my post I’ll quote from Atreyu’s Dad: `We try to live a normal life as much as possible, but the disease is always at the forefront of your mind … But you have to stay positive and enjoy every day with your child.’ Here here!

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