July's spotlight is musician DeMitrius Wyant, known by many as AR the Prophet. He uses his music to shed light on the struggles warriors face, is an outspoken advocate on priapism, and educating on holistically managing sickle cell.
Hemoglobin Genotype: hemoglobin SS (most common and severe form)
Share your personal journey with sickle cell disease and how it has impacted your life.
My personal journey with sickle cell started rough with an abundance in lack of information. I grew up miseducated about myself and my rare chronic illness, leading to a mismanaged illness that I suffered from. With all that I was going through it was more so shocking to see the medical professionals who’s care I was under be so uninformed and uneducated on Sickle Cell.
As a result of both my family’s lack of information and the lack of care received from the medical system, it resulted in me wanting better for myself as I grew older.
Leading up to today, I’m doing so much better with Sickle Cell understanding my body with this illness. By managing my care to the best of my ability with the help of a medical team that now listens to me; we help each other when it comes to making the best decisions for my care.
What are some common misconceptions about SCD that you would like to debunk?
A misconception that I would like to debunk are the stigmas surrounding Sickle Cell Disease. How people with sickle cell are treated as drug seekers. Sickle Cell pain is REAL!
A Sickle Cell crisis is as serious as a heart attack, and we need to be treated in such manner when arriving to emergency rooms. Also, the misconception of Sickle Cell being a “one size fits all.” Every person with sickle cell is different, just because a sickle cell treatment works for one patient doesn’t mean it will work for all. Sickle Cell is special and spontaneous and needs to be treated as such.
How do you manage the symptoms and challenges associated with SCD in your daily life?
I manage symptoms and challenges one day at a time. Making sure I'm eating the right
foods and hydrating myself. Making sure I stretch and keep my heart rate active but not overexerting myself. Making sure I rest as much as I can, keep my stress down. Making sure to stay positive and hopeful, knowing my life matters and that my wellbeing and happiness matter.
Describe a particularly difficult moment you've faced because of SCD and how you overcame it.
I faced a difficult time with sickle cell with priapism. I was 27 when I had 2 surgeries for priapism, a prolonged erection in the penis of men living with sickle cell due to lack of blood flow. That was very difficult for me, however I knew that if I wanted to see better, I had to be the change I wanted to see. I was nervous but I got through it with prayer and faith. Now I'm able to talk about it and help others that may be going through the same issues. Its difficult to speak about vulnerable situations regarding sickle cell, and I know that. I’m blessed that I can be an example and a voice for man young and old that may be dealing with priapism.
What advice would you give to others living with SCD or to their caregivers?
Take your health serious! Sickle Cell is serious.
Believe your child when they say they are not feeling well, when they are in pain.
Find healthy alternatives to manage your sickle cell when you are healthy and feeling good to keep that feeling going.
Sickle Cell takes work, self-discipline, and a support system that loves you.
Sickle Cell takes patience. Talk with your support system and keep your mental health healthy.
You deserve to live well with sickle cell, and you CAN!
Share a positive experiences or silver linings that have come from your journey with SCD.
Music has been my therapy. It’s helped me be able to express myself living with sickle cell to a community that understands. Music has been another form of medication for me as a healing alternative through sound therapy helping my mental and physical heal through frequencies and vibrations. Good Energy!
What are some ways you advocate for yourself and others in the sickle cell community?
I advocate for myself and for others by telling my story living with sickle cell at sickle cell conferences, through music, support groups, volunteering at sickle cell summer camps for kids, podcasts, any chance I get to advocate and educate on sickle cell I take advantage. Also, being a certified Medical Advocate for sickle cell through SCMA Sickle Cell Medical Advocacy Group, I studied and trained to be a more sufficient advocate for myself and others in the hospital. I recommend this course for ALL sickle cell patients, I learned so much.
Lastly, what is one important lesson or insight that living with SCD has taught you?
Sickle Cell has taught me that I deserve to live well. Its taught me that pain can be physical, mental, and subjective. Sickle Cell has taught me self-awareness, self-appreciation, and most importantly sickle cell has taught me self-discipline.
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