This month's warrior spotlight is Bethany Chasteen - model, actress, RN, & CEO
Hemoglobin Genotype: hemoglobin SS (most common and severe form or sickle cell)
Share your personal journey with sickle cell disease and how it has impacted your life.
I was born with sickle cell SS. I first showed signs when I was 4, having a splenectomy, which set forth a wide range of crises, including a pulmonary embolism that put me in critical condition. Lately, I have been on a regime that has greatly decreased my pain crises.
My experiences have deeply shaped my outlook on life and my pursuit of my aspirations. I am blessed & grateful for my past.
What are some common misconceptions about sickle cell disease that you would like to debunk?
One of the biggest misconceptions I encountered was regarding prophylactic pain management. A couple of years ago, after not being hospitalized for a while, I ran out of pain medication and was told by a doctor to let the crisis happen and go to the ER when in pain. This attitude can lead to the perception that we are drug-seeking, which is not the case. It's vital to educate healthcare professionals and the public on the realities of living with sickle cell disease.
How do you manage the symptoms and challenges associated with SCD in your daily life?
I ensure to keep a routine that helps me manage my health, including medication adherence and lifestyle choices that promote overall wellness.
It’s also about being open with my work as a model and nurse, knowing that sometimes I may be in pain and unable to fulfill commitments.
Describe a particularly difficult moment you've faced because of SCD and how you overcame it.
There have been many difficult moments, particularly when I had to navigate unexpected pain during important events. I’ve learned to prioritize my health and communicate with those around me. Being open about my condition has been empowering, allowing me to take control of my situation rather than feeling defeated by it.
What advice would you give to others living with sickle cell disease or to their caregivers?
Don’t let the doctors and the statistics deter you from your purpose. It’s essential to pursue your dreams despite the challenges.
Surround yourself with a supportive community and advocate for your needs.
Share a silver lining that has come from your journey with sickle cell disease.
One positive experience has been that my challenges have propelled me to create the Love Flaws Foundation. This platform has allowed me to connect with others, share our stories, and celebrate our imperfections. It's rewarding to empower individuals to embrace their flaws and redefine beauty.
What are some ways you advocate for yourself and others in the sickle cell community?
I started the Love Flaws Foundation based on my challenges with insecurity regarding my scars due to sickle cell. Through this foundation, I advocate for individuals with sickle cell and promote understanding and acceptance of our experiences.
Lastly, what is one important lesson or insight that living with sickle cell disease has taught you?
Living with sickle cell disease has taught me not to let statistics or doctors deter me from my goals and dreams. My journey has instilled a resilience that drives me to follow my passions and help others along the way.
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