Becoming a Master Sickle Cell Patient

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I often underestimate how much I have learned about sickle cell over the years. To live with a chronic condition, one must understand all the symptoms and side effects that come with it. However, these lessons aren’t freely given — there isn’t a handbook for living with sickle cell. I had to learn on the job and hope my decisions didn’t lead to a crisis or a hospitalization.

At this stage in life, most of my choices are based on information I have gathered over time. But this wasn’t always the case.

First, I had to learn about sickle cell and how it works. When I was in school, the only reference to the disease was that a person has some resistance to malaria if they have the sickle cell trait (when a person inherits one sickle cell gene and one normal gene).

My classmates would say I had resistance to malaria, which is a good thing. However, I’ve since learned that this fact isn’t necessarily true for someone like me, who has sickle cell disease (when a person inherits two abnormal copies of the sickle cell gene).

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As a result, I’ve recognized the need for additional research to separate the myths from the facts. This foundation gave me the ability to explain sickle cell to others and educate those around me.

After learning about the disease in a generic sense, I then had to find out how it affected me personally. I realized that sickle cell doesn’t affect everyone the same. I didn’t have jaundice, and I’d never experienced some of the symptoms, such as stroke, that many of the patients I’d met had.

In conversations with my doctor, I was able to ask the right questions about my health. For example: Why do I need to take penicillin? Is folic acid necessary? How can I improve the results of my bloodwork?

With this information, I was able to focus on my lifestyle choices. Lifestyle is probably the most difficult aspect for me to manage.

As a baseline, my day starts with many different multivitamins and supplements to ensure I meet a minimum threshold with my nutrient intake. Everything else I eat or drink is a bonus. Building this routine over time has allowed it to become an automatic habit, which provides me with many health benefits that help me manage my condition.

From my support network of sickle cell patients, I have learned so much. Not every sickle cell patient is the same, but there’s plenty to learn from others, including how to converse with your healthcare professionals, what support is available for sickle cell patients, and how to manage the disorder. This step took me a while because I didn’t know how to communicate with other patients. Once I took the first step in reaching out, I gathered a lot of new information.

Acquiring this wealth of knowledge has helped me manage my condition in ways I never thought possible. I have achieved several of my personal goals, and continue to make more ambitious ones. Taking the time to research what works for my body has given me the confidence to master this condition.

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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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