Summer Is Here, So No More Sickle Cell Crises, Right?
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It’s summertime, my favorite season here in the U.K. Summer brings great music, good vibes, and no crises!
Sigh, I wish.
I love summer weather because one of my main triggers for a sickle cell crisis is the cold. Unfortunately, in the U.K., summer isn’t consistent in terms of the weather. In a week, we can have scorching temperatures, and then torrential rain with hail. As you can imagine, this is super frustrating for anyone, but when you have sickle cell disease, it’s even more so.
Extreme temperature changes can trigger a crisis as the body tries to adapt to weather changes. When it’s cold, veins constrict, and cells are deoxygenated for longer periods, making it more difficult for blood cells to pass. This increases the likelihood of a crisis.
When it’s hot out, it’s easier to become dehydrated, which makes blood sticky and increases the likelihood of a crisis. Clearly, it’s all about striking a balance between hot and cold temperatures. In reality, it just isn’t that simple.
I have always struggled to manage sickle cell during sudden weather changes. In August 2018, I was hospitalized because I wasn’t wearing appropriate clothing for a change in the weather. It was hot that fateful day, so I wore shorts and left my jacket at home. Then, in the evening, the temperature dropped and it started to rain. I should have known — it was a feeling I knew all too well — that exposure to a temperature change would trigger a crisis.
This crisis happened in my back, and I was in the hospital for about a week, unable to walk for the first few days. The doctors said my C-reactive protein markers, which track infection, were high, so they had to treat the infection before I could leave. It was the first time in six years I had been hospitalized with a crisis, so it felt like I had lost the war against sickle cell disease. I blamed myself for forgetting what the pain was like, for being so irresponsible, and for forgetting my jacket.
It took me a long time to come to terms with the fact that it is OK to forget sometimes, and it is OK to enjoy the great weather. I had to actively work on forgiving myself. I had to teach myself that I hadn’t lost the war against sickle cell, I’d just lost a battle. You can’t win every battle, and I’d been winning for six years. I was still determined to win the war, and summer will always come around again to be enjoyed.
Now, to prevent being caught off guard by the weather, I’m very active on weather apps. It may sound like a weird thing to be active on, but being able to check the weather down to the hour helps me plan. Questions I ask include will I need a coat in the evening? Do I have enough water to stay hydrated? Can I schedule a nap or a rest?
We can’t always preempt a crisis, but being forward-thinking helps me act as preventively as possible. The more I plan, the more I prepare, and the more it becomes second nature. It’s a lifestyle, after all.
Summertime will always be my favorite season, and sickle cell isn’t going to rob me of that. I just need to be more cautious than most and not get too carried away — most of the time!
Am I the only one who gets a little carried away? Let me know if you feel the same in the comments below!
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Note: Sickle Cell Disease 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 Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Debbie
Feel u . I feel the same many times. U are lucky u are abroad. Good medical facilities. Just remember in all sickle or no sickle God loves u.
Dunstan Nicol-Wilson
Thank you, Debbie. Same to you, you are appreciated.
Stephanie Baker
Reading this article spoke to my soul because this is exactly how things happen for me. It's like you looked into my brain and picked a situation out and wrote about it! I love the summer time (I live in Mississippi) and I seem to have the worst crisis in the summer! It didn't use to be this way. Thank you for sharing and keep up the good work.
Dunstan Nicol-Wilson
Thanks Stephanie! I'm glad I'm not the only one! I heard it gets really hot in Mississippi so it must be difficult sometimes. Keep going strong!
Samuel Lam
Hi Dunstan,
Thank you for your great post and perspective on your battles with sickle cell. I work for a not for profit and we help put together a newsletter for the thalassaemia and sickle cell community in Australia and a lot of what you said could be so relevant to many in our community.
We would love to feature your work (this or other content) if at all possible in our newsletter. Let me know if we can work together. We are always looking for new perspectives and stories to show our community!
Our contact details are on our website (www.tasca.org.au).
Keep up the good fight! :)
Dunstan Nicol-Wilson
Thanks, Samuel for your kind words and reach out! I'll be in touch.
Alexis Rodriguez
Hello Dunstan,
Thanks for share your experiences.
I'm from Spain and I have a son with sickle disease. For my family the worst period of time is summer because in Spain it's very warm and my son have had pain crisis always in summer. We have to spend almost every day at home with the air conditioning and we left home only in the evening. It is hard to get used to but it is what it is. Good luck! I follow your work by twitter from @AsafeFalciforme.
Dunstan Nicol-Wilson
Hola Alexis :). Thank you for sharing your experience with your son and the kind words. Yes, it can be difficult to manage when it is really hot. My best wishes to him and the family!