Well, summer in the U.K. seemed to last all of 2 seconds. Now we are back to colder weather, shorter days, and higher heating bills. As the colder seasons arrive, those of us with sickle cell disease need to be more intentional about looking after ourselves. The cold may expose…
Her Sickled Journey – a Column by Tito Oye
We are in the middle of Sickle Cell Awareness Month, and I can look back on my time as a sickle cell advocate and feel extremely proud about how far we’ve come as a community. When I started raising awareness about sickle cell disease by sharing my…
I recently posted on social media about a benefit that London residents with sickle cell disease may be entitled to, and its reception made me both happy and upset. As a Londoner, I’ve been using a disabled persons freedom pass for years. Provided by the U.K. government, this…
In September, I celebrate two years since my last serious sickle cell crisis and hospitalization. I’m so happy to be in this position, because I don’t take my health for granted. I know how bad sickle cell can get, so the fact that I’ve stayed healthy for so…
Sickle cell disease is considered a rare condition. In the U.K., where I live, an estimated 15,000 people have it. In a population of over 66 million, it’s safe to say that my chances of meeting other people with sickle cell are extremely low. As a child, not many…
Having sickle cell disease or other chronic conditions means having to overcome many hurdles. For example, receiving bad news about our health can cause us to be sad. While it’s impossible to be positive all of the time, we still must do what we can to have a positive…
The Summer Olympics in Tokyo are in full swing, and even with the multiple hurdles that COVID-19 has created, I am happy the games are taking place. I’m not hugely into sports like many people are, but whenever a large event like the Olympics or the World Cup is…
Last week, I did something I never thought I would do. It’s something that people with sickle cell disease are strongly advised against doing. But it also has redefined my abilities and defied the limitations I once imposed on myself. My friends and I took part in a 10-mile…
When speaking to a person with a chronic illness, you might do and say things with the best of intentions, but sometimes it may not translate well. Following are some of the things I don’t like to hear. Apologies Sometimes when I tell someone I have sickle cell disease, they’ll…
I can’t stress enough the importance of drinking water. Experts recommend that normal, healthy adults consume six to eight glasses of fluid daily. Staying hydrated allows the body to function more optimally, which is especially important for people with sickle cell disease, as the potential consequences of dehydration are…
Recent Posts
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- 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
- Chicago nurses lead charge to speed up SCD emergency care: Study