Sickle cell disease is an inherited disorder in which the red blood cells have an abnormal crescent shape, block small blood vessels and do not last long as normal red blood cells. The red blood cells become hard and sticky and look like a farm tool called a sickle. The sickle cells die early which causes a constant shortage of red blood cells. When they travel through small blood vessels, they get stuck and clog the blood flow, causing pain.
Day to day living and coping mechanisms vary from one patient to another but the most important which every sufferer must possess is optimism. Every warrior, as we like to be fondly called, must be optimistic and live through every day with a positive attitude. That is the greatest weapon for every sufferer of SCD. Optimism lightens the burden.
Being optimistic does not come easy. As a person living with SCD, I did not get optimistic overnight. It took 39 long years before I developed a positive attitude towards living as an SCD survivor.
Every day for a victim of SCD is a battleground; surviving each day means you have conquered. SCD sufferers face some challenges which include: the possibility of crises; living in fear of pain; hassles of unexpected crises; delayed treatment; mental state of SCD patients, etc.
The degree of pain differs in every patient but it is the most dreaded for all sufferers. Crises are the pain you experience when you have blood clots in your system. The possibility of having these pains is one of the challenges we face every day. The possibility of experiencing these pains affects the mental state of every warrior. Sometimes, you may think you are fully equipped to handle everything SCD throws your way, only for the thought of having crises to change that. Once you allow that thought to sway you, it ruins your well laid out plans.
Thinking about the possibility of having crises can lead you to live in constant fear of having pains. For instance, you might feel like taking a cold shower after a hot day but knowing that if you stay too long under the shower, you could suffer a crisis, would halt you in your tracks that way you are already living in fear of pain.
You may also want to take an evening walk and you notice the change in weather. The fact that you think it will rain, would definitely dissuade you from taking the walk because getting drenched in the rain may lead to a crisis. Growing up, my mother made sure that getting caught in the rain was something I dread; for a very long time, I lived in fear of the rain. Until I grew up and devised means of avoiding getting soaked in the rain and things to do to avoid crises whenever I got drenched.
There is also the hassles or trauma caused by the unexpected crisis: A warrior may wake up in the morning feeling fine and looking forward to a beautiful day, with a lot of plans he/she intends to execute, only for him/her to discover, halfway through the day, that there are signs of crisis and — before you know it— boom, a full-blown crisis.
The duration of the pain varies as well. It could last for a few hours, a few days or longer. Crisis can occur when an SCD patient is sick. In cases where the patient is not sick and unexpectedly has crises, it could have been triggered by dehydration or stress. In cases of dehydration, the signs are noticeable and, when quickly attended to, an unexpected crisis may be averted.
In my own case, my signs of dehydration are sticky saliva in the mouth and slight dizziness. The moment I notice these signs, I quickly take plenty of fluids, especially water. I take as much as I can and ensure that as soon as I visit the loo, I refill. That way I rehydrate myself before it turns into a situation where the hospital would do that for me through I.V fluids. Stress could also trigger unexpected crises. In my case, operating in hot weather tends to be stressful.
Crises leave an indelible mark on every warrior and the thought of having them unexpectedly is dreadful. It causes a lot of hassles for the patient, such as loss of time, lack of socialisation and a lot of restrictions for the sufferer.
The time lost during such episodes can never be regained. Plans have to be cancelled, or rescheduled if possible, but you cannot get them done at the allotted time again.
It is very important for people with SCD to look after their own health using self-care measures primarily, avoiding triggers and managing pain. Finding ways to manage crises at home may help alleviate pain in mild crises but it is not possible to avoid hospital emergency rooms in cases of acute crises. Unfortunately, many SCD patients feel judged and stigmatised by nurses and doctors when visiting the emergency room. Therefore, they delay getting the required treatment at the hospital in hopes that the pains would subside.
Encountering incompassionate healthcare workers can also be very devastating. Many warriors have lost their lives due to the uncaring attitudes of nurses.
Family, friends and associates of SCD patients should always ensure that they check on them regularly; talk to them when you notice certain withdrawals, especially from social activities.
SCD patients are highly susceptible to depression, mood swings, anxiety, social withdrawal and panic attacks. People around SCD patients should monitor any slightest change in behaviour and try to talk to them during such periods.
Coping with these challenges can be very tasking for warriors and this brings me back to my earlier point on optimism. Developing a positive attitude is very essential for every SCD patient. Furthermore, having a good dietary habit helps with coping.
Eating foods with healthy nutritional values, like fresh vegetables; fruits like bananas, oranges, cucumber, apples and watermelon all help to boost the immune system in order to fight against infections which may lead to severe crises.