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…
Her Sickled Journey — Tito Oye
Tito is a 23-year-old London-based tenancy manager and lover of life. For as long as she can remember, she’s had a passion for helping others. She writes to help others realize that sickle cell doesn’t need to define their entire identity.
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Now that the summer months have passed, I find that it’s harder to forget that I have sickle cell disease. You may be thinking, “How can she ever forget that she has sickle cell?” Well, I never really forget, but there are times when looking after myself requires less…
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…
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…
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…
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