What to Expect When You’re Diagnosed with Sickle Cell Disease (SCD)

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What does it mean if you have the sickle cell trait? Or what if you have sickle cell disease?

Does it mean you can’t exercise? Does it mean you will experience pain regularly? There are a lot of misunderstandings when it comes to sickle cell disease, and sickle cell anemia in particular.

Fortunately, we are more knowledgeable and prepared today than at any point in the past. SCD is a genetic condition—that means that it comes down from the parents. Babies are frequently tested at birth to determine if they carry the gene that will cause sickle cell disease. This testing usually happens if the parents know they carry the gene or the newborn is in a demographic that is susceptible to the disease.

If only one parent is a carrier, it is not possible to develop the full disease, but there is a possibility of the children also being carriers. If both parents are carriers or have sickle cell, there is a possibility of the children being carriers or having the disease.

For people without the disease, red blood cells are shaped like discs with a bulging edge. For people with the disease, the red blood cells are shaped like crescents (like the blade of a mowing sickle–hence the name sickle cell). These misshapen cells cannot carry oxygen as efficiently as normal cells.

This is the primary job of red blood cells. These crescent-shaped cells will also get caught in the veins and create blockages. As if these challenges were not enough, these misshaped cells only live a fraction of the time that a healthy cell lives. When the body can’t keep up the production of red blood cells, the disease is now sickle cell anemia.

When the blood flow gets blocked, a pain crisis can result. If the red blood cells are not carrying oxygen throughout the body, there will be pain. If the organs don’t get enough oxygen, they can be damaged.

People with sickle cell disease should work with their doctors to determine what they can and cannot do. However, we should not misunderstand. People with sickle cell disease can and have done great things. Click here to read the stories of two people with sickle cell.

Now that you know more, you’re better prepared for having or helping someone who has sickle cell disease.


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