A lot is happening in the world right now. We are in the midst of a pandemic and a civic revolution. I believe it is important to use my voice to start a conversation about diversity, specifically in our small community. It might be a bumpy conversation, but it needs to happen.
As a white, middle-class woman, I am unable to speak about most diversity issues. Luckily, I have some wonderful friends who are willing to let me use my voice to share their thoughts and experiences. All of their social media links are listed below, so please take some time to check them out.
Cystic fibrosis (CF) is a predominantly Caucasian disease of European origin. According to Smithsonian Magazine, “CF is the most common, potentially lethal, inherited disease among Caucasians—about one in 40 carry the so-called F508del mutation.” This is where the lack of conversation about diversity begins.
Teena Mobley, a black person in the CF community, was originally diagnosed with asthma at a young age. It wasn’t until she was 10 years old and on the brink of death that she finally received a diagnosis of cystic fibrosis. Her doctors didn’t consider that she had CF because it is not a predominant disease in the black community. People often are shocked when she tells them she has CF.
“It is important to understand that any person of color can have cystic fibrosis. It is an illness that any race or gender can have, which can be even harder to remember because it is an invisible illness,” Mobley said.
The scope of diversity goes beyond race. Miranda Porche, an LGBTQ+ member in a biracial relationship, has faced adversity that has affected her healthcare. She shared with me an experience she had with a respiratory therapist during a hospitalization for a CF exacerbation. The respiratory therapist entered her room speaking negatively about a previous patient who was transgender.
Porche and her transgender partner were able to have a polite and educational conversation with the respiratory therapist. However, later in Porche’s stay, a group of friends was visiting, and many were transgender. The respiratory therapist arrived to perform a much-needed breathing treatment, but refused to enter the room because of the presence of Porche’s friends.
Porche wants to share with the CF community that, “If there are any other people with CF out there struggling with their sexual orientation or gender identity, know you are not alone. Though being an LGBTQ+ member in the CF community is not often talked about, there are people with similar experiences.”
So what can we do to help recognize diversity in the CF community?
Ashley Wilson, a person of color in the CF community, attributed having a diverse care team as helping her to be treated as an individual. She said that continuing to spread awareness is starting to open eyes about the scope of diversity in the CF community. Meeting other people of color in the CF community — virtually, of course, thanks to infection control protocol — has been exciting. It is an extra connection in addition to having CF.
“Growing up in a mixed family, my mom is white and my dad is black, I was fortunate to have an inclusive community,” Wilson said. “I wasn’t raised to feel different. In moments where I start to feel different, I voice how I feel. It has helped me become a strong advocate for myself.”
Wilson hopes her message will inspire hope in the CF community, particularly for those who may feel underrepresented.
One important message from all three of these wonderful people is that you should be yourself, and we should lift each other up. Advocate, educate, and chase your dreams.
I am honored to have started a discussion about diversity in the CF community with each of them. What will you do to spark the conversation in your life?
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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