I previously wrote about my struggles with the disorder in this post and a few months after that post, I lost a niece to the complications of SCD. So sad to be dealt such a cruel hand but that’s life. Hardly fair all the time.
Quick facts about Sickle Cell Disease (Courtesy: WHO)
- Sickle-cell disease is an incurable genetic disorder widespread in sub-Saharan Africa and among African descendants worldwide. It’s a genetic condition which is as a result of hemoglobin disorders.
- ‘Normal’ red blood cells are flexible disc shaped and move freely through the vessels, but SCD sufferers have abnormal ‘sickle’ shaped red blood cells which would often get stuck in blood vessels, cutting off oxygen supply to other parts of the body resulting in severe pain aka crisis
- SCD still has no cure, yet. Who knows what tomorrow will throw up? I pray it throws up a breakthrough in medical science so sufferers of SCD can find some respite.
- In Africa, 200,000 infants are born annually with the disorder and 60% will die as infants.
- Nigeria still has the highest incidence / number of sufferers of the illness in Africa and globally, leading to more infant deaths. The prevalence is more like 20 ‘SCD’ infants per 1000 births or about 150,000 babies born annually, accounting for 75% of infant sickle cell cases in Africa, pretty high to me
- SCD reduces the sufferers’ quality of life with some being stigmatized and labelled ‘sicklers’
- Globally, there are more carriers -people who only have the trait by inheriting only one mutant gene from one parent, eg. AS – than of full blown SCD (the SS, SC ‘categories’).
- Sufferers may periodically experience severe rheumatic pain and are also highly prone to anemia (sickle cell anemia) because the blood cells break down faster.
Talking about other diseases, I wonder why SCD sufferers are labelled ‘sicklers’ when sufferers of other diseases are hardly labelled in like manners. Never heard of ‘cancerers’ or ‘hepatiters’ etc or have you? This labeling does little for SCD sufferers’ self esteem and should really be discouraged.
My early years and that of my immediate elder sister was spiced with hospital runs, daily intake of folic acid, BCo and every kind of pain relieving tablets, hot compresses, etc. It was tough but God was and is still faithful because I still I’m unable to recall when the major turn-around happened. But it just did and we didn’t do nothing to merit it. Grace. Mercy. Pure and simple.
In the last 6 years, I recall suffering one major crisis besides the one written about in my earlier mentioned post. Besides the frequent lower back aches, headache, occasional bone and joint (rheumatic) pains which we manage with rest and occasionally ibuprofen and PCM, I have been fine. Really. Not even had malaria treatment once this year. It’s been the God-factor. Ain’t no way I’ve come this far by myself, It’s been His grace and I will be eternally grateful for that.
So, scapel in hand, let’s set about trying our bit to squash this. Snip off the flowers and leaves and stem and root….
If you or your child or sibling suffers from this disorder, you may benefit from educating yourself as much as possible. Make Google your friend while also establishing a close relationship with your doctors too. Get as much information as you can handle.
Seek answers from every reliable source available to you in order to fully acquaint yourself with this condition. Read, read and read. If you are fully armed with the necessary information, chances are this condition will cease being the boss in your life.
Also, you can greatly help yourself or your child by being in constant contact with your doctor or health care giver; build a relationship with them and go for regular pre-emptive check ups and blood tests. Don’t wait until you have a crisis before visiting your doctor to get yourself checked out.
That pro-active step may well be a saving grace and may help to avoid oncoming crises.
You can also avoid crises or significantly reduce the frequency of occurrence by trying the following:
- Rest: Proper / adequate rest is essential to a healthy you. You don’t want to stress yourself by working Monday-Friday and still bustling to attend that owambe gig all through Saturday. You really don’t want to do that to yourself. Proper rest is really vital to a healthy you and would help in avoiding crises. Give your body the rest it deserves, don’t over-drive your systems and organs as it could have fatal consequences. It may be difficult but definitely achievable. REST.
- Avoid stressors. Anything at all that can make excessive demand on your body and mind should be avoided. This may not be very easy in the world we live in but it’s possible. Stop sweating the small stuff and draining yourself or wearing yourself out. Pick your battles and consciously make efforts to conserve your energy because after all, they are indeed small stuffs.
- Go green. Eat healthy. Right foods like fruits and veggies are very important for SCD sufferers. Eat as much fruits and vegetables as you can afford daily. Lettuce, aloe vera, cucumber, cabbage, orange, watermelon, tomatoes (I hated eating raw tomato but mum insisted), spinach, pineapple, apple, etc. Your body will thank you for it. Cut out the unhealthy stuffs and reinforce your immunity – unhealthy stuffs like carbonated and caffeinated drinks….soda, coffee, cigarettes, ‘processed’ juices, etc. They stress our organs, forcing them to work extra hard to eliminate these junks we clog our systems with.
- Malaria is a major cause of death and illhealth in people living with SCD so exposure should be reduced or totally avoided. Sleep under insecticide treated net, do away with puddles and maintain proper hygiene.
- Hydrate…hydrate…rehydrate. this is the most important of all. Drink lots of water daily. You can’t have too much of water intake. Drink, drink, drink and drink. You need to stay hydrated always. Hubby always encourages me on this point and is always quick to recommend this first before prescribing painkillers. My mum instilled the habit of taking two cups of water first thing in the morning, on empty stomach and it stayed with me. I revolted at first but soon got used to it and I’m better for it today.
- Exercise. Try and exercise daily, nothing strenuous or tiring. Some brisk walking would do for a start and if your body allows, a little jogging would help. But always listen to your body, when it says enough, then you should stop and relax.
- Always maintain a positive outlook, free your heart and mind of all worries and always hope for the best. Do not see yourself as a ‘sickler’ but rather see yourself as a unique being who can do everything by the power of the One at work in you. Continuously improve your mindset and start making little lifestyle changes and see how everything would pan out.
- Avoid extremely cold conditions as these could trigger crisis. I remember always coming down with pain anytime I was caught in the rain or anytime I was exposed to very cold weather. Cold and I are oil and water, we still don’t mix.
I have tried all of the above tips and I can assure you they work. No harm in trying, really.
You will get better and better to a point where all forms of crisis would be a thing of the past, just like in my case. It’s absolutely possible to live a full, crisis-free life…beyond the 21yr mark.
I have been off Folic acid, Vitamin B for a loooooooonnnnnng while and this year, I haven’t taken paracetamol let alone ibuprofen which had been a constant companion in years gone by.
If you are a sufferer or you have kids or wards or siblings who suffer from this and you need to talk to someone, please feel free to contact me.
So are you a #sicklestar or know anyone bearing this burden? Feel free to share on how you / they have been coping.
A pain-free world would be a peaceful and perfect world, to me.
Disclaimer: The above is provided for information purposes only and should not be substituted for medical advise, you may want to get your doctor / medical personnel’s opinion before making a major lifestyle change.