Between 12,500 and 15,000 people in the UK are living with an inherited blood disease that makes daily life a struggle

 

In layman terms, sickle cell anaemia is a serious inherited blood disorder where the red blood cells, which carry oxygen around the body, develop abnormally. This disorder mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin. In the UK, sickle cell disorders are most commonly seen in African and Caribbean people.

The sickle-shaped cells contain defective haemoglobin, the iron-rich protein that enables red blood cells to carry oxygen from your lungs to the rest of the body. The abnormal cells are also unable to move around as easily as normal-shaped cells and can block blood vessels, resulting in tissue and organ damage and episodes of severe pain. These episodes are called a crisis or a vaso-occlusive crisis. They can last from a few minutes to several months, although on average most last five to seven days. Simply put, it’s a painful episode that can pretty much happen in any area of your body (mostly the joints) due to the blockage.

Because of the above happening, blood and oxygen cannot get to your tissues, causing excruciating pain. This complication can lead to further health problems such as stroke, acute chest syndrome and pulmonary hypertension.

Additionally, certain activities or circumstances can trigger a crisis. These can range from dehydration to weather temperature or stress. Each sufferer has different triggers and no matter how minor something may seem, it can easily lead to a crisis that may result in health complications.

However, sickle cell anaemia doesn’t just have a physical effect on sufferers, it places an emotional burden on them too. Due to the strain carried by the sufferer, patients of sickle cell tend to battle with anxiety, depression and low self-esteem.

With the vast amount of people suffering from sickle cell anaemia and the serious complications that follow, why is there little to no awareness of this disease?

There is little to no publicity about this disease and the worst part is that even in the medical field, most doctors and nurses seem to be oblivious about it and fail to treat sufferers in crisis effectively. There is minor support for sufferers and it’s mostly left up to them to fund and build a support system, which can be very hard. Without funding from people (due to low awareness) it’s difficult to build a platform that caters specifically to sickle cell patients and their loved ones.

Sickle cell patients have silently suffered for decades, is it not time to give them a platform? To hear their voices? We must educate the population so that this disease is understood more and sufferers get the support they desperately need.