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Julian plays drums, makes music and marched in his high school band. He’s interested in studying music and audio engineering. He feels ready to conquer adult life on his own because his mom, Thea, has helped prepare him for this transition. Julian greatly appreciates everything she has taught him, including how to take care of himself. He talks about his decision to be private about his sickle cell. Being private has the advantage of not feeling vulnerable, but also has the disadvantage of having a hard time asking for help.
“I don’t really present myself as in pain whenever I’m having a pain crisis. If I am out in public, I keep it to myself. I just wait until I get home so I can deal with it…. I don’t really let anyone know because a lot of the time people don’t know how to help me and if I’m in pain I get aggravated very easily.”
— Julian
Julian tries to manage his pain the best way he can. He works to keep his stress levels low, stay well-hydrated and rest at home when he needs it. He strongly encourages others to talk to their doctor about how to best manage their pain.
Julian tries to take care of himself, but has learned that sometimes real strength is shown when you ask for help. Julian believes it is important to surround yourself with a community of people who can advocate for you and support you.
Julian is in the process of planning ahead for his life as an adult. In order to achieve his dream of working in the music industry, he set goals to manage both his career and his health. When living with sickle cell, planning these two things together can help you succeed. Also, setting goals can give you a reason to take the best care of yourself.
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November 2023.
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The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider.