Many people have lived with sickle cell all their life. They’ve never known anything else. They have the most severe form of sickle cell disease. While not all, many have been told they won’t survive past a certain age. They won’t live to see, for example, their 15th birthday. Sickle cell was like a death sentence.

A sickle cell disease is a genetic blood disorder that can cause many lifelong problems, including chronic pain, fatigue and organ damage. Other features include, but not limited to, weakness, severe migraines, paleness, total exhaustion, and exquisite pain throughout the body.

When patients get attacks they are usually bedridden for days or weeks, months or even years, depending on the attack, diagnosis and complications. Recently, there have been instances where patients have lost fingers and limbs just to stay alive. Many of them.

A crisis is the hallmark of sickle cell disease – and a crisis is just pain in any location of your body. You can have it wherever blood flows. If I had to describe it, it would be like repeatedly being stabbed with a butcher knife in the same spot, nonstop. Some suffer a lot more than others because of variability in pain manifestation and body sensation. Believe me, no matter how hard-hearted you may be, it’s hard to watch someone in crisis suffer. You would feel you just want to take the pains for them.

Losing someone to sickle cell hurts a lot, but I think, for those with empathy, it also help ignites their passion for building awareness about this disease and making a difference to their community, despite all the odds.

Many have been living with the pain and complications of sickle cell disease all their life. From countless trips to the emergency department to several major surgeries and frequent clinic visits for preventive treatments. For the privileged few that can afford overseas treatment, they find some comfort in the system and the way they’re handled. For those unlucky ones, it’s like dipping burnt fingers into an acid, because of the constant misdiagnosis and the subsequent sufferings they are made to go through after.

One unifying factor, however, is that all sickle cell patients find themselves on the bed at some point. Except that the bed isn’t in their room at home – it’s in a clinic room at the hospitals.

The 7th grader has had the tonsils, spleen and gallbladder of many young children and even adults alike removed, predisposing many to serious lung infections and several bouts of pneumonia, especially the young chaps. And while many rely on mild to average pain killers to hedge off pain at home, severe pain can warrant a trip to any emergency unit of any hospital for stronger analgesics, like pentazocine or morphine.

Although sickle cell can be very hard on children and adults who have it, the disease can take a heavy toll on the entire family, too. Because pain can strike suddenly without warning, it can be difficult, if not impossible, to make plans for any given day, especially in complicated cases. To make matters worst, the average life expectancy for someone who has sickle cell, molecular researchers say, is automatically half the national average of each country.

How true this assertion is, for me, depends on many factors, though not totally disputing it. To add insult to injury, to date, there isn’t any cure. One, among many reasons I worry about sickle cell patients every day of my life.

While they might not be much, I’ve known and I’ve seen many healthcare professionals rendering great care and solace to sickle cell patients, making it hard to even separate their personal perspective from professional responsibilities. I’ve seen people growing professionally with equivalent growth in understanding on how and why caring for sickle cell patients can really come from a place of compassion. To them, it is difficult to see someone you care for in any type of pain. Your reaction, to such professionals, is to try and remove it, fix it or simply wish it away.

There are others whose stories are not encouraging, completely. Sadly, they’re the majority and are defining lot of narratives. Despite people’s education, despite people’s professional successes, despite someone’s beautiful family, people have been treated inhumanely by health care providers who have acted as though one’s life was meaningless or totally dependent upon them.

Sincerely, such professionals need to do a lot of self examination to move away from their own concepts of what should and should not be done to care for people, realizing that to support and offer space for someone means to accept their ideas of care and help, because mostly, only them understand what they’re going through.

There are many stories of abuse, despair, pain beyond measure, disappointment, depression and people feeling isolated in a world where society is so misinformed they think people with sickle cell are nothing but contagious agents. But there are also stories of triumph, hope, inspiration, strength, faith, courage and an amazing will to do more than survive — to live. One can’t but fall in love with such amazing people.

But we all can break this cycle. This cycle of suffering, of pains, of despair and of constantly watching our own going to the hospital in need of comfort. That’s because we can avoid giving birth to sickle cell children. While for those with the disorder already, we can make them feel like us, live like us and have a normal life like ours. How we can achieve it depends largely on our will, and commitment to saving lives.

Information is largely the key. People must be informed on how to avoid producing sickle cell children. Genetic (genotype) testing and counselling, marriage counselling and effective risk communication.

Much as people of every locality are vulnerable, I worry most for those at the rural areas. Necessary information hardly gets to them. Even when it does, healthcare services are at best abysmal, providing room for an already established menace to go unchecked. It puts innocent children at the mercy of unskilled healthcare personnel, promoting misdiagnosis, complications and avoidable suffering.

At the individual level we must do more to educate our peers, both urban and rural dwellers. We must evolve as advocates of sickle cell people, all of us. We must push the government to establish sickle cell emergency centers across every local government, across states and comprehensive sickle cell centers across the federation.

Non governmental organizations must also key into this problem by leveraging on the works of local NGOs to push for global attention. Frankly, apart from the very few indigenous ones, I’ve not seen any multinational organization pushing the agenda for sickle cell issue. That needs to be done as it mostly paves way for researches to that regard.

Just like HIV/AIDS patients, TB, women with breast cancer and malnutrition, sickle cell patients deserve compassion, fair treatment, media attention and research grants. Like many other neglected ailments, sickle cell deserves a place on the national and international health agenda. But like I posited earlier, above anything, at our very individual level, we’ve a chance to avoid having sickle cell children. And that’s a very important tool to use, as that alone, together with provision and access to comprehensive sickle cell centers, can reduce sickle cell cases, complications, sufferings and deaths beyond measures.

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Follow Abubakar A. Musa on Twitter at @blinkingam

 Op-ed pieces and contributions are the opinions of the writers only and do not represent the opinions of Y!/YNaija.