Many people with chronic illnesses may agree with a common statement that “our illnesses do not define us.” I understand that some believe their illnesses don’t change who they are. They can still live a meaningful, successful, and fulfilling life despite dealing with an illness. However, I disagree with that…
Her Sickled Journey – a Column by Tito Oye
There is no single weight, shape, size, age, or ability that dictates healthiness — no single standard. Our bodies and minds are built uniquely, so we must embrace our differences to avoid making unhealthy assumptions and comparisons. Many combined factors are used to assess health:…
Unfortunately, the healing process is not always as straightforward as we’d like it to be. In fact, it can become quite exhausting and frustrating. For example, perhaps after feeling unwell for some time due to an illness such as sickle cell disease, a person’s body may start to…
In 2005, my doctors started me on a medication called hydroxycarbamide, also known as hydroxyurea, or “hydra.” It was prescribed to help me manage the symptoms of sickle cell disease. Many people with sickle cell disease use hydroxycarbamide. Before my care plan changed to regular exchange transfusions, I used…
Recently, a fellow sickle cell warrior messaged me on Instagram to ask if I thought they should document their health journey by starting a blog. This is something I will never discourage. I started publicly sharing my health journey with a blog,…
I have a lot of pride when it comes to my general knowledge. I think I am a great person to have on your team when playing board games like Articulate and other general quizzes. You can trust me, I’m not being biased in the slightest. As a kid,…
When I go to my doctors with a problem, I’m never under the impression that it’s something permanent. Rather, I’m usually optimistic that they will offer a solution. Recently, I have been experiencing pain in my lower back and knees. After a few X-rays and MRI scans,…
For the first time in my life, I played a game of football, or soccer as it’s called in the U.S., with my friends. Was it tiring? Absolutely! Was it fun? Extremely, and I would certainly do it again. I’ve watched my fair share of football…
Last Wednesday, I received my second and final dose of the COVID-19 vaccine. Because I have sickle cell disease, I was among the first groups of people contacted to receive the vaccine due to my high risk of negative outcomes from the novel coronavirus. I…
Sickle cell disease and exercise were antonyms for me growing up. I was raised with the view that they do not go hand in hand. My parents saw how vigorous activity adversely affected my health, so they discouraged it. From primary school to secondary school, I would hand…
Recent Posts
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis