Loss In The Sickle Battle Field Is A Lesson To Be Learnt

Few years ago, I gave hope to a girl, told her she can grow up, study as high as she can, have a normal life, have family on her own. I made her to dream big, and told her that she can have anything she wanted, as long as she took care of herself. That one year, she went to school, did her best to excel. She took care of herself, for a moment she owned her disease. And then, the bomb started ticking. I never thought that day would come. My heart sinks every time I think of her. How brave she was even to the last moment. The story of her life is worth a thousand lessons. And one of those lessons included Sickle-beta thalassaemia.

If you google up sickle-beta thalassaemia you’d find it listed among rare diseases. Sickle beta thalassemia is inherited from parents that can be diagnosed as early as when the baby is in your tummy or usually during early childhood.

Its symptoms and complications may vary from mild to severe, depending on the beta thalassaemia gene that is carried by the person. Problems include moderate to severe anaemia (low blood count); episodes of pain in the arms, legs, stomach, and back (pain crisis); increased risk of serious (blood) infections in younger children; gallstones; enlarged spleen; and risk of sudden drops in blood count and many more other complications that may lead to organ failure that may be fatal. 

Now you must be wondering what a crisis is? The sickle-shaped red blood cells break down faster than normal cells. The sickle shape cell have a tendency to stick to each other and also can get stuck in your blood vessels, preventing flow of blood (oxygen) to areas of the body. This causes immense pain and can damage body organs, such as kidneys, lungs and even bones.  Stroke and other medical problems can be caused by blocked blood flow. When these problems happen, it is called a crisis.

I hope u all realise now that sickle cell is a ticking time bomb. With 16.3% Beta Thalassaemia and 0.14% sickle carriers in Maldives (source: Society for Health Education) the possibility of these two genes to meet in one child is so high here, According to the recent analysis of the sickle variants diagnosed at the SHE lab, from 1998 to 2015, there were 108 sickle cell trait, 9 Sickle-Beta Thalassaemia, and 6 homozygous, fully blown Sickle Cell Aneamia cases diagnosed. Sickle Cell Disease is not such a rare disease in Maldives. But it’s an invisible disease. Get yourself screened. Know your status. It’s your responsibility.  Prevent a child being born with Sickle cell Disease cause I wouldn't wish this pain on my worst enemy.

Her story also tells us that we need sickle cell specialists here, in order to guide and treat patients like us. A person with expert knowledge whom may actually be able to diffuse this sickle bomb and prevent any fatality.  But since we don’t have one at the moment, its important that we have access to appropriate and reasonable medical care. wipe away clinical ignorance by raising sickle awareness among the medical professionals, parents and caregivers. we need to win this battle against Sickle Cell Disease.

The treatment and research plans so far have been weak. The lives of individuals and their families struggling with the diseases to the most part have been ignored. Our experiences as a patient needs to be listened to and learnt. We may not have a certificate that says we are sickle experts but we have survived a history of trial and error.

Take our lives, our experiences as an open book. Each one us, has a story to tell. If you read and look into it, you’d find that our fight is the same, however, our struggle to win this battle differs in each individual. The different roads that we took to beat the unbearable pain are worth a try on someone who’s fighting the battle in your hands.