Advice From Older Generations of Sickle Cell Patients Gives Me Hope

Previously, I’d never been in a room with more than five sickle cell warriors at a time, and those I’ve met have always been about the same age as me. But last week, I had the privilege of participating in a discussion about sickle cell disease at a National Health Service sickle cell and thalassemia center in Croydon, South London, here in the U.K. It’s safe to say I was taken aback by the number of people who arrived for the talk.

It may not sound like a lot, but we spoke to about 20 people that day. Most of the audience members had sickle cell disease, and the rest had a loved one with it.

Being able to share experiences with other people is always a wonderful thing, but this time around, I was in awe of the audience, particularly their age and how healthy they were.

Recommended Reading

October 7, 2021 News by Yedida Y Bogachkov PhD

UK Adds New Sickle Cell Therapy Adakveo to National Health Service

I’d never met older sickle cell patients. The oldest I’d previously met was 43. But in the audience that day there were people with sickle cell disease all the way up to 84 years old. Meeting them was an eye-opening experience, and I’m so happy I got the chance.

Sickle cell typically is expected to worsen with age, or so we’re told, so many of the hopes we tend to have for our future are limited. We believe that our bodies may not be able to handle certain activities as we age. But to see a woman with sickle cell at 84 seemed like nothing short of a miracle!

I briefly spoke with this woman and told her that her mere existence brings me hope. She shared with me how doctors — as is the case for many sickle cell patients — didn’t believe she would live to such an age. Yet she is still quite mobile, joyous, and full of life. She defies the odds every day as an older sickle cell patient!

She advised me about the importance of eating well, resting, and managing my triggers. These things should be done with intentionality, and we mustn’t be too lackadaisical about it, she said. She also told me not to worry, that life happens regardless, and we shouldn’t spend too much time worrying. Instead, we should treasure each moment that life blesses us with.

This encounter gave me so much hope for a long life and the ability to accomplish amazing things. I discovered that even at an older age, sickle cell disease can be managed effectively, and life can be lived to the fullest.

What is the best piece of advice you’ve been given regarding managing your health? What wisdom have you gleaned from older sickle cell patients? Please share in the comments below.

***

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.