Whenever I meet new people and tell them I have sickle cell disease (and explain what it is), they often ask how they can help.
June 19 is World Sickle Cell Awareness Day, so I thought it appropriate to discuss ways that you can help the sickle cell community, including friends who may have the disease.
Here’s how to help
Because many of the affects of sickle cell disease are internal, the sad reality is that there isn’t much you can do to prevent patients from experiencing them. However, that doesn’t mean you can’t help at all.
My first piece of advice to anyone trying to support a person with sickle cell disease is to be understanding.
Due to a lack of oxygen being transported throughout the body by red blood cells, sickle cell patients can quickly feel lethargic or experience sporadic crises. These might cause plans to be canceled or days and nights to be cut short. Please be understanding.
That I miss out on so many social activities with friends due to my health concerns leaves me disheartened. I certainly am not alone in this. If you are on the receiving end of a similar cancellation, please remember that anything you can do to make your friend with sickle cell disease feel included would be greatly appreciated.
Sickle cell crises have many causes, many of which we can’t control. When we are able to have some input, it is ideal to take preventive measures to avoid the outcome of a crisis.
For example, cold weather and stress are detrimental to sickle cell patients and can lead to a crisis. Try to avoid taking your friend with sickle cell outdoors in the rain or snow. Choose indoor social activities instead.
Also, try to help your friend manage stress in a healthy way.
If you’re an employer of a worker who has sickle cell, help to manage their workload. If they feel inundated or pressured at work, the stress could lead to a crisis, which means time away on sick leave. This negatively affects both the worker and the business.
Try to cultivate a working environment with open and honest communication, so that employees feel comfortable approaching you when issues arise. Due to the nature of this disease, unexpected sick leave is a possibility, so please be sensitive to it. Treat your employees fairly and don’t make them feel guilty for being ill.
It is important to note that people rarely want or need babysitting. Please do not become overly cautious with sickle cell patients, particularly in social or work settings. Follow what the patient says, and don’t try to force them into things.
What to do during a sickle cell crisis
A sickle cell crisis can happen anywhere. Believe me when I say nothing is more annoying than when it happens in public.
Remember that a sickle cell crisis causes crippling pain, so it likely will be one of your friend’s most vulnerable moments. Please protect their dignity!
If your friend is in extreme pain, has limited mobility, or responds to the pain emotionally, people will stop to stare. Try as best as you can to avoid people peering over and looking. Everyone loves a show, but for your friend, this is real life — and it is their life. No one wants strangers seeing them during their most vulnerable moments.
Speak to your friend while they are having a crisis. This is important for two reasons: firstly, to ascertain the course of action needed, and secondly, to keep them calm.
Sickle cell patients need to drink a lot of water. If your friend is able to drink, give them water. If they have access to pain relief, they may need help administering it, depending on the location of the pain.
Also, some patients find that heat pads, ice packs, or massaging the affected area minimizes the pain. Follow the patient’s guidance on this.
Helping the community
Please consider donating blood.
An ongoing schedule of blood transfusions is one of the main preventive treatments for sickle cell patients. For this to continue, we need people to donate blood. You can do it quickly, in a pain-free process. If this is something you are willing to do, please search for local initiatives.
If you are in a position to contribute financially, please seek out local or national sickle cell charities to donate to.
Can you think of other ways to help? Please share in the comments below.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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