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  • Writer's pictureJoye Smith

To improve our quality of life, we have to imagine greater awareness

I’m extremely passionate about raising awareness of sickle cell disease. That probably comes as no surprise, considering I have the condition and write a patient column focused on precisely that! Still, I like to imagine how greater awareness could improve our patient care and quality of life. It’s an inspiring exercise.

Greater awareness would mean the sickle cell community would be smaller than its current population. If more people know about the disease and its causes, my thinking goes, they’ll factor that into their family planning — and therefore, the number of sickle cell babies born each year would decrease over time.

In my imagined world, I’d also love to see those stupid stigmas about sickle cell patients fall away, as so many of them are negative. There’s the belief, for instance, that we’re drug addicts lying about pain to get high; that we’re all destined for death; that we practice witchcraft; and that we’re cursed with the disease because of a sinful lifestyle. And I could go on. So many negative stigmas are attached to us across communities around the globe, and all of them harm our safety and well-being.

If there were more accurate knowledge of sickle cell, I imagine that it’d trigger safer interactions with healthcare services. I’d like to see medical professionals treat us kinder and with more empathy, believing us and listening to us. Such a change would drastically improve our quality of life because we’d be receiving the right medical treatments, on time, thus mitigating the risk of long-term damage and complications that we now experience.

2 years on: Raising awareness by documenting life with sickle cell

Currently, many of us fear going into the hospital (sometimes to our detriment) because of how its staff might treat us. In my imagined world, there’d be a kinder hospital environment that encourages sickle cell patients to seek intervention as soon as necessary — instead of waiting as long as possible, which is too often our current reality.

Moreover, this imagined change would enable patients to be more transparent about our difficulties. At the moment, it’s difficult to be honest about all of my sickle cell concerns because I fear the information could be used against me when I’m suffering an acute vaso-occlusive crisis.

In my imagination, we’d be free to live anywhere. I dream of the day when we’re safe at all hospitals so we don’t have to limit ourselves to living near the good ones. Currently, I’m forced to live in particular areas to access hospitals in localities with higher concentrations of sickle cell patients. That requirement affects our families and can reduce our access to good schools and sufficient services.

The costs of the awareness dream

Lastly, greater awareness of sickle cell disease would afford patients like me the luxury of confidentiality and privacy. Most people are afforded this luxury with their healthcare, but many of us with sickle cell have to sacrifice it when we suffer and are treated. Why? Because we want our healthcare stories to raise awareness.

You see, we have to be open about the realities of our illness because change cannot happen if we’re secretive. The awareness we create might improve not only our own situations, but also those of others within the community, as well as the generations that will follow us. Thus, we often have to share intimate challenges and past traumas on open forums and platforms to spearhead the change we need.

Such change is our top priority, but what we have to disclose to get it is not fair. We should be afforded the choice to have our health matters private, like most other patients. Imagine what that would be like!

It’s not miraculous stuff that I’m requesting; it shouldn’t have to remain in my imagination. But sadly, the changes I foresee are now fictitious because too many are ignorant, without sufficient awareness and education. These inequalities sadden me and detrimentally affect our quality of life. All sickle cell patients are ill, due to no fault of our own. Change, education, and compassion are imperative, and immediately, if we’re to tackle these entrenched problems.

The inequities sickle cell patients face are far-reaching, touching nearly every area of our lives, and they’re rife across the disabled community. This Rare Disease Day, Feb. 29, I’d like to spotlight some of these issues and challenge every reader to consider what they can do differently to ensure all rare disease patients are treated fairly, have sufficient access to opportunities and treatment, and enjoy a better quality of life.

Just imagine.

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