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    Sickle Cell Disease Follow-​U​p Program-V2

    What is Sickle Cell Disease? 

    Sickle cell disease (SCD) is a common disorder of the red blood cells, or hemoglobin. The name comes from the shape of the red blood cells, which become shaped like a C or a sickle (an old piece of farming equipment).

    • These cells are sticky and rigid, rather t​han round, soft and smooth, and cannot move easily through the body. 
    • Because of their odd shape, they may not be flexible enough to squeeze through small blood vessels and can deprive body parts of oxygen and can cause pain and damage tissues. 
    • SCD is a disease that is inherited, this means that it is passed from parents to children. A child must receive a sickle cell trait from both parents to have SCD. ​
    SCD is serious and can cause complications.Regular primary care and specialty care visits are essential to improving quality of life

    What is Sickle Cell Trait? 

    Sickle cell trait (SCT) is an inherited blood disorder. It affects 1 to 3 million Americans, according to the American Society of Hematology.

    A person with SCT has inherited only one copy of the sickle cell gene from a parent. A person with sickle cell disease (SCD) has two copies of the gene, one from each parent.

    Because a person with SCT has only one copy of the gene, they will never develop SCD. Instead, they are considered a carrier for the disease. That means they can pass the gene for the disease on to their children. SCT can never turn into SCD.A simple blood test from your doctor can determine if you are a carrier and at risk of passing along  SCT.

    Those who are at increased risk include people of:
    • African, 
    • Hispanic, 
    • South Asian, 
    • Southern European, or 
    • Middle Eastern descent. 

    How can SCT impact a person’s health?

    Although it’s rare, people with SCT can develop symptoms of SCD,  such as pain crises, under extreme conditions. These conditions include:

    • Increased pressure in the atmosphere, such as with scuba diving
    • Low oxygen levels, which can occur while performing strenuous physical activity
    • High altitudes
    • Dehydration
      • Athletes with SCT need to take precautions when performing. Staying hydrated is extremely important.

    Some conditions linked to SCT, include: 

    • Reduced blood supply to the spleen
    • Muscle breakdown (rhabdomyolysis) 
    • Kidney damage and chronic kidney disease
    • Bleeding (hyphema) and increased pressure in the eye (glaucoma) following eye injuries

    What do I need to know about SCT and sports? 

    People with SCT can safely participate in all sports provided they take a few general precautions, such as

    • Drinking enough water;
    • Taking breaks when needed; and 
    • Not overdoing it, especially when starting a new exercise program.
    (The conditions that increase the risk of exercise-related illness for athletes with SCT appear to be the same as those that increase the risk for athletes who do not have SCT and include 

    •  Significant and sudden increase in exercise intensity;
    •  Failure to adjust gradually to new environmental conditions like higher altitude, increased heat, or higher humidity;
    •  Exercising when ill or dehydrated (lack of fluids); and
    •  Drug, alcohol or stimulant use).

    How is Sickle Cell Trait (SCT) Inherited? 

    • If both parents have SCT, there is a 50% (or 1 in 2) chance that any child of theirs also will have SCT, if the child inherits the sickle cell gene from one of the parents. Such children will not have symptoms of SCD, but they can pass SCT on to their children.
    • If both parents have SCT, there is a 25% (or 1 in 4) chance that any child of theirs will have SCD. There is the same 25% (or 1 in 4) chance that the child will not have SCD or SCT.

    What does the Maryland Department of Health’s Sickle Cell Disease Follow-Up Program do?  

    The program follows newborns, children, and young adults with SCD up to age 18, providing them and their families information about  sickle cell disease (SCD)and other hemoglobin disorders, what to expect from your doctor and specialist, guides to living with SCD, and other information pertaining to daycare, school, sports, transitioning to an adult doctor, web resources and organizations of interest to persons with SCD.​​​