June 19th is World Sickle Cell Day. It’s a day designed to bring awareness to the many lives affected by Sickle Cell Disease everyday.
When I was in Residency, I took care of so many young children who suffered from this illness. It’s heartbreaking to see young children who have no idea why they are in pain, or why they end up spending time in the hospital every few months. It’s a tough illness to explain to a child, because there is nothing physical that they can see that’s wrong with their body. They just fell the pain. Even parents who seemed to be doing everything right to help care for their child with Sickle Cell, were frustrated by the amount of times their child became ill. I have a friend who suffers with this illness daily. I’ve witnessed the heartbreak of a family after experiencing the loss of a child with sickle cell.
What is sickle cell?
Sickle cell is a disease of the red blood cells. These are the cells that make the blood red, and are responsible for carrying oxygen around the body. There are different types of Sickle Cell, and each is inherited by children from their parents.
In general, with any of the sickle cell disorders, the red blood cells become “sickled” and misshapen. Because of the distorted shape, the cells don’t flow quite as well and can block the flow of blood to different parts of the body. This causes a lack of oxygen in those areas and significant pain.
Are there complications?
Those affected by sickle cell are at a high risk of complications such as strokes, pneumonia, bone damage, and infections. Because of the repeated episodes of decreased oxygen, there’s also a huge chance of organ damage.
Is there a cure?
The only cure for sickle cell is bone marrow or stem cell transplant. Unfortunately, these are not readily available for most patients, and can be tough processes to go through. Treatment usually focuses on preventing the disease from getting worse, and preventing complications. This includes certain medications, antibiotics, plenty of fluids, pain management, and blood transfusions. There is a ton of research being done to help those who suffer from this disorder. But, more can always be done. That’s the reason for days like this.
What can we do?
Sickle cell disease, and the young children who live with it daily, have always held a special place in my heart. On this World Sickle Cell Day, I encourage you to learn a little more about this disorder and the lifelong struggles that come along with it. It’s not an easy illness to treat, and it’s not easy to watch a loved one suffer with it.
If you know someone with sickle cell, call them this week and encourage them. Since so many rely on blood transfusions on a regular basis, donate blood if you can. Volunteer at a children’s hospital or hematology clinic. It helps to just know that someone is there, someone who cares. Donate to sickle cell research. Help to bring awareness to this disorder, so that we can help these children and adults live longer, more fulfilling lives.
Here are a few resources to learn more and to donate:
Foundation For Sickle Cell Disease Research
Sickle Cell Disease Association of America
St. Jude’s Children’s Research Hospital
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