Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
Sickle cell disease is one of the most common serious genetic conditions affecting people in England, where I live. An estimated 15,000 people have the disease here in the U.K. According to the Sickle Cell Society, approximately 300 babies are born with sickle cell each year in…
Continuing the spirit of offering suggestions to make the healthcare experience more efficient for patients and the National Health Service (NHS) here in the U.K., I want to address the restrictions governing which hospitals ambulances can take patients to. My previous two columns have detailed how the need…
Many sickle cell patients spend a lot of time in the hospital. As inpatients, our symptoms are treated, and as outpatients, our lives are monitored to keep our condition as controlled as possible. However, frequent hospital visits can be highly disruptive and hinder our ability to maintain a…
For me, one of the worst parts of having sickle cell disease, aside from the horrific, debilitating pain of a crisis, is navigating the emergency department here in the U.K, where I live. I appreciate that it’s a high-pressure work environment that brings heavy responsibility, and it…
I recently got a new manager at work, which has improved my quality of life as a disabled worker. This change also instigated the creation of an emergency evacuation plan for me, and that change I question. To be clear, I’m not a wheelchair user, but I occasionally use…
Today is Good Friday, which in my faith marks the crucifixion of Jesus. The Bible narrates that Jesus was crucified, remained dead for three days, and rose to life on the third day. The resurrection is celebrated on Easter Sunday. Much of the Christian faith is based upon this weekend.
How can you help a loved one with sickle cell disease? As a patient, I’m asked this question frequently, especially when I’m unwell. The reality is that there’s no single grandiose action that will help people living with sickle cell disease. I’d challenge loved ones to think smaller,…
I graduated from college in 2010. Fortunately for me, I was able to secure a job before I had even finished school. In August of that year, after finishing my final exams, submitting my dissertation, and passing a background check, I began a full-time job. I’ve been working ever since,…
I’ve shared some of the hurdles I face when traveling abroad as someone with sickle cell disease. I now have something else to add to the list. I recently returned home to the U.K. after a three-week trip to Jamaica. Not only was it my first long-haul flight,…
In many of my columns I’ve referred to suffering a sickle cell crisis. But what does that mean? Sickle cell disease is a disorder that affects the red blood cells. These cells are usually circular and biconcave, allowing them to easily transport oxygen around the body. But in…
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