A message of hope for my sickle cell community

I celebrated yet another birthday last week.

I love birthdays. As someone living with sickle cell disease and the difficulties it brings, I’ve learned that life is fickle. Therefore, it’s important to be grateful for every year and to celebrate the gift of life. A celebration doesn’t always have to be extravagant, but considering how much we sickle cell patients experience and overcome, sometimes a big celebration is appropriate.

Although we have a long way to go in terms of ensuring adequate sickle cell care is accessible to patients globally, the progress made in recent years is also worth celebrating.

When I was born, my parents were told that the life expectancy for sickle cell patients was about five years in Nigeria, and 10 years in the U.K., which is why my family remained in England. To have surpassed these milestones and now be in my mid-30s is a testament to the medical advancements that have been made in the past few decades. With potentially curative therapies now on the market, I’m trying to remain optimistic that this illness can be eradicated at some point in the future.

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My family and I are truly grateful for the quality of life I’ve been able to maintain, despite the hurdles of this illness. At times it can be a real struggle to see the silver lining when difficult symptoms are raging through my body and affecting my life plans and social calendar. I try my best to remain positive through it all.

How far we’ve come

So, as I begin another trip around the sun, I’d like to encourage all sickle cell patients and their loved ones to remain hopeful. Think about how far you’ve come. Think of all the progress you’ve made personally, as well as all the progress made in medicine and care. Think of the life you’ve lived so far. There may have been times when you thought you couldn’t go on, but you did, and now, here you are.

I want our community to understand how unstoppable we can be. I want us to be aware of the excellence we can achieve, the positive change we can deliver, and the equitable society we can build by sharing our experiences. The hardships we endure are never wasted. It can be emotionally strenuous to share the intimate details of our healthcare experiences, but know that none of it is in vain. Scattered across the globe are people who see and hear us, people who are using their skills and knowledge to create more treatment options and improve care access for us all.

I will continue to press on, too. My goal is to focus on the silver linings, not the gray clouds.

I truly hope that the frustrations I voiced in my previous column will be explored. Perhaps by my next birthday our community will be having serious conversations about the reality of curative therapies for sickle cell patients. Even with the progress that’s been made, it would always be better to be free of the shackles of this disease. (However, I do want to note that even if a therapy cures sickle cell, patients may still struggle with long-term side effects or lingering complications of the disease.)

I will continue the fight for adequate healthcare and treatment, hopefully bearing fruit for us all.

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.