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I often underestimate everything I have learned about sickle cell disease over the years. Living with a chronic disease requires understanding all of the symptoms and side effects that come with it. However, these lessons are not given for free – there is no manual for living with sickle cell disease. I had to learn on the job and hope that my decisions didn’t lead to a seizure or hospitalization.
At this point in my life, most of my choices are based on information I have gathered over time. But this has not always been the case.
First, I had to learn about sickle cell disease 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 a sickle cell gene and a normal gene).
My classmates said I had resistance to malaria, which is a good thing. However, I have since learned that this fact is not necessarily true for someone like me who has sickle cell disease (when a person inherits two abnormal copies of the sickle cell gene).
As a result, I recognized the need for further research to separate the myths from the facts. This foundation gave me the ability to explain sickle cell disease to others and to 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 anemia does not affect everyone the same way. I did not have jaundice and had never experienced some of the symptoms, like a stroke, which many of the patients I had encountered 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 blood tests?
With this information, I was able to focus on my life choices. Lifestyle is probably the most difficult aspect for me to manage.
As a baseline, my day begins with many multivitamin and supplements to make sure I reach a minimum threshold with my nutrient intake. Everything 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.
Devil support network from sickle cell patients, I have learned so much. Not all sickle cell patients are the same, but there is a lot 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 long time because I didn’t know how 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 that I never thought possible. I have achieved many 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 take control of this condition.
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To note: News about sickle cell disease is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of News about sickle cell disease or its parent company, BioNews, and aim to spark discussion on issues relating to sickle cell disease.
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