By Mildred Orbih
Sickle cell disease is a lifelong disease that comes with a host of complications, but the most common of these are episodes of pain commonly named a sickle cell crisis.
A sickle cell crisis is caused when the blood vessels in certain parts of the body become blocked due to the abnormal shape of a ‘sickle-shaped’ red blood cell. With a sickle cell crisis, pain can begin suddenly and last from several hours to several days. Much of the research into a sickle cell crisis is focused on the trigger of particularly painful episodes, however, the mental ramifications of a sickle cell crisis are generally not considered.
The extent of pain experienced in a sickle cell crisis varies from person to person and depends on how severe the episode is. Medications used to treat the pain that comes with a sickle cell crisis ranges from weak opiates (e.g. codeine and hydrocodone) as first line treatment, to stronger opiates (e.g. morphine) in cases of moderate to severe pain.
On average a person with sickle cell will have 1 bad crisis a year, but for others it can be over a dozen a year. Sometimes painful episodes can be triggered by the weather such as colder conditions or snow; in some cases, these triggers can develop into fear. For younger patients they may fear going outside during particularly bad weather. This could progress further on in life into cancelling plans with friends and lead to a sweeping isolation in the colder months of the year. All these situations can have profound mental impacts on people with sickle cell disease.
Through the experiences of the videos below I was able to gain a better understanding of the realities of sickle cell, through first-hand accounts of both patients and the doctors that work with them. If you can spare some time, watch and listen to them, because awareness is the first step for substantial change and progress in our understanding of sickle cell disease.