Recently, while on a long journey, I rewatched one of my favorite movies, “Inception.” I find the concept of the film unique; in short, it’s about manipulating someone’s subconscious or dreams to create a strong idea or obtain information. Our dreams and desires are powerful forces that can…
Columns
I was recently hospitalized for a sickle cell crisis. You see, I’d planned to go to dinner with a lovely friend whom I hadn’t seen since before the pandemic. But that was for the evening. When my sister-in-law reached out to ask my sister and me to join…
I almost can’t believe my son is 2 years old already! It doesn’t help that every time I take him out, acquaintances, and even some friends, scream in disbelief when they see him — they still expect to see a sitting baby, not a running toddler. I’m thankful he’s been…
Building relationships while having a chronic condition can be a daunting challenge. On the one hand, you want to be yourself and let people accept you for who you are. On the other, you might worry about how people will treat you and how they will respond to…
Having a condition like sickle cell disease can bring a lot of bad days. Crisis pain and extreme fatigue can be unbearable. Sometimes it feels like there are more bad days than good ones, as my collection of past traumas tends to resurface in my mind. However, I’ve recently…
Health-related stigma, as I discussed in my last column, is not the only stigma that afflicts those with sickle cell disease. There’s another stigma attached to it, one more localized, that can still have a detrimental effect on the patient. I’ll refer to this as culturally influenced…
In my last column, I provided some caregiving tips to help people support loved ones with sickle cell disease. One thing I suggested is having a crisis care plan in place, though I haven’t yet prepared one myself. The goal is to help those who are unfamiliar with…
I have written about learning to appreciate those who support me on my journey with sickle cell disease. My support network plays a pivotal role in advocating for me when I’m in pain and unable to communicate. Additionally, they care for me during my recovery. Without my support…
Disease representation is essential in all aspects of life. Over the years, I’ve noted a few mentions of sickle cell disease in mainstream media by celebrities. I’ll never forget hearing “Hidden Pain” by A Star when it was released in 2019. It was the first time…
Living with sickle cell disease means dealing with constant fatigue and painful vaso-occlusive crises. These symptoms can impede on a normal life with wide-reaching implications, such as limiting social or work capabilities. Unfortunately, sickle cell also carries a stigma, both in life and within healthcare communities. Getting…
Recent Posts
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- New Mediterranean network aims to improve hemoglobinopathy care
- How my sickle cell diagnosis intersects with my music
- How workplace accommodations help people with sickle cell disease thrive
- How I’ve helped expand access to care for sickle cell patients like me