To mark #SickleCellAwarenessMonth brave 9 year old Darien Russell-Jones who attends Central Middlesex Hospital at London Northwest University Healthcare NHS Trust tells us what it’s like to live with sickle cell.

“As I am writing about my experience, it has been 12 weeks since the lockdown, and since then I have been at home shielding from the Covid-19 pandemic with my parents and sister.

I was scared at first because I have sickle cell and knew I was more of a risk of getting it after listening to the news and the government saying thousands of people would die. One of the reasons I was scared was because I already had pneumonia last year in Jamaica and was in the hospital for two weeks and I heard on the news that pneumonia was a symptom.

I am 9 years old and living with sickle cell. I live a normal life knowing I have the disease. I can remember getting sick three times in my life. I eat foods that keep me healthy, especially foods that are rich in iron such as liver and green bananas. I also drink a lot of water to keep my eyes from becoming yellow (jaundiced) and it keeps me feeling well. I also go outside so I can exercise and get to play as it also expands my lungs.

Having sickle cell has not stopped me from doing the things I love such as playing sports, playing with friends and travelling the world which I enjoy.

Since taking hydroxycarbamide I have noticed the difference with my growth. My family keeps saying also that I have grown a few centimeters taller. This made me happy because at first I could see that I was shorter than the kids in my year group. I am really happy that schools are opening so I can see if I’ve caught up to my friend’s height.

The main thing to remember about living with sickle cell anemia is to eat healthy, drink plenty of water and exercise!”

Find out more about the London Northwest University Healthcare NHS Trust here: www.lnwh.nhs.uk

Check out our other blogs here: www.sicklecellsociety.org/blogs/