More education about sickle cell disease can lead to better care

Why Rare Disease Day awareness efforts should include healthcare professionals

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by Dunstan Nicol-Wilson |

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For Rare Disease Day on Feb. 28, I’ll be speaking to medical professionals about sickle cell disease and how they can better support our community. It’s a brilliant opportunity to influence future change and leave a lasting impression on healthcare professionals. In preparation, I have reflected on my journey managing sickle cell disease and my relationship with the healthcare system here in the U.K.

As a child growing up with sickle cell, I didn’t understand what was wrong with me. I would get overexcited about an event, and suddenly I’d be hit with waves of pain that left me immobilized. I began to link excitement with pain and would try my best not to be excited. However, this was almost impossible growing up — the world is so exciting to a child.

Having an invisible condition meant that my mum would always ask me if I was OK. The only time I would admit I wasn’t was when I had a sickle cell crisis and couldn’t hide the pain.

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I can’t say I liked going to the hospital, but that was usually the next step once I had come clean about the pain. However, these hospital admissions and checkups as a child began to teach me about my condition. The pediatric team took care of me and explained what was happening.

They would encourage distraction techniques such as games on my phone or focusing on other things while they took painful blood draws or tried to stabilize the pain. They believed in my pain, and as a child, I was always taken seriously. However, despite becoming more informed about my condition, those I interacted with in school or in public didn’t understand.

As a result, I began to pretend that I was OK when I wasn’t. Despite my pain, I would do my best to go to school to feel normal like everyone else. Going to the hospital was the last option, not because I was scared of the care I would receive, but just to fit in. To be like the other kids, I was internally suffering with my reality.

A change in care

As I grew older, my reluctance to go to the hospital changed from wanting to be a “normal” kid to fearing for my life and the treatment I would receive. This occurred in 2012, when I experienced my worst crisis and was subjected to many errors in care at the hospital. At 19, I was now experiencing hospital admissions as an adult. I was left for hours in agony, and none of the care team seemed to believe that I was in extreme pain.

Comments such as “He doesn’t seem like he’s in pain; he’s on his phone” and delays in providing me medication had a negative effect on me. The distraction techniques I had been taught to use as a child were now working against me. These moments probably seemed irrelevant to those responsible for my care, but they had the effect of setting me on a dark course mentally for the next six years as I avoided the hospital at all costs.

I dissociated myself from the healthcare system and probably have long-lasting damage because of it. I was already marginalized due to having a rare condition like sickle cell, which was exacerbated by those who were supposed to be trained to care for me.

For this talk, I want to highlight these experiences and drive home how essential health professionals are to the rare disease community. With a condition like sickle cell that isn’t well understood, professional healthcare is crucial in a patient’s life. Healthcare professionals should educate themselves about sickle cell disease and, above all, believe their patients. Let’s work together to find the appropriate solutions moving forward.

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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