I gave my son a dose of his pain medication. I sat by him and waited patiently hoping the pain would go away. It's been a few hours and even though he had fallen asleep, I could hear him as he groaned painfully in his sleep. He shivered and I realized it was getting cold in the room. The freezing Minnesota winter weather isn't helping matters. I left the room to go grab a warm blanket hoping the pain medication would have kicked in by the time I return.
I came back into the room and slowly covered his trembling body with the warm blanket. He had woken up and I could see the pain clearly evident his eyes. The chronic pain would not let him sleep. He was trying hard to fight it with every movement of his body. It's depressing and exasperating that he was still in so much anguish considering the amount of pain medication he'd had to wolf down.
This situation has a way of rendering one helpless and the huge feeling of impotence can be frustrating. It is immense torture watching the pain ravage his skinny body. I had spent the night praying. The massages, pain medicines and the warm blankets weren't helping, so what next?. Most likely another couple of nights in the hospital. I held back the tears. It hurts not being able to do more to help after trying fruitlessly to innovate possible ways to conquer the pain. You're struggling to develop a strong backbone but the reality of the situation seems to be wiping out your effort. It's difficult when you have to roll with the hard punches as it seems to be out of your control.
He turned to me and smiled and said softly, "Mum, it's okay"
At that moment I started to cry uncontrollably. My son just said it's okay. My boy going through so much pain says it's alright. In his state of severe aches and agony he had smiled and consoled me. Truly, warriors are created through trials and adversities.
That is a recount of one day out of the many of those kind of days for my son and many others in our world who have fought or are still fighting Sickle Cell disease. Smiling amidst the pain and thriving in the face of adversities is bravery and depicts the characteristics of a warrior. Sickle Cell pain strikes unannounced and incapacitates. Inspite of the challenges, Sickle Cell warriors thrive, overcoming with the strength of a warrior and making sure that giving up is not an option.
Today marks another World Sickle Cell Awareness Day. In 2008, the United Nations designated June 19th as the World's awareness day for Sickle Cell disease. A lot of people still don't know about Sickle Cell Disease. It is an invisible disease that comes with a lot of pain. Everybody ought to know. Everyone from every race needs to be aware. Sickle Cell disease is no longer restricted to only people of a particular race. There are interracial marriages. People of all colors, race and ethnicity are now prone to carrying the Sickle Cell gene. It is important that every person is aware of what kind of gene they carry to avoid future unpleasant surprises.
It is crucial that a viable cure is found to end the pain. Our advocacy is to push for proper allocation of resources needed for research for this cause. We create awareness to make sure everyone is aware of their genotype. We advocate for support groups and support materials for our warriors. We seek to shine the light on Sickle Cell Disease because everyone needs to know.
It's World Sickle Cell Day. A day dedicated to celebrating our warriors who fight everyday to overcome Sickle Cell Disease. Today we create awareness and support our warriors, looking forward to a World free of Sickle Cell Pain. We aim to educate and inspire and together we will end the Sickle Cell Cycle.
What is Sickle Cell Anemia?
Sickle cell anemia can be described as an inherited form of red blood cell disorder. The red blood cells are abnormally crescent shaped. It is a chronic condition in which there is not enough healthy red blood cells capable of carrying adequate oxygen throughout your body.
How do you inherit Sickle Cell Disease?
If each parent has either the Sickle Cell Trait or the Sickle Cell Disease, a child could inherit two abnormal hemoglobin genes from each parent thereby getting the disease.
Symptoms
Sickle Cell Symptoms includes Anemia, Painful Episodes, Swelling of hands & feet, Frequent Infections and Heart Attacks, among others.
Complications
Chronic Pain, Stroke, Organ Damage, Acute Chest Syndrome, Gallstones, Leg Ulcers, Blindness among other health problems.
Is there a cure for Sickle Cell Disease?
Drugs like Hydroxyurea have been known to help reduce the chronic pain and hospital visits but the only known cure for Sickle Cell Disease is the Bone Marrow Transplant, which could be brutal to the body organs.
Check Your Genotype
Genotypes are genes which are passed from parents to children. It is very important that you check your genotype and know what genes you have in order to avoid future painful surprises.