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Sickle Cell Disease Follow-​U​p Program

​Common Questions​

What is Sickl​e Cell Disease (SCD)?

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.

  • These cells are sticky and rigid, rather than 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 gene from both parents to have SCD.
Image of normal red blood cells and sickled blood cells. Normal red blood cells are circle shaped, sickle cells are crescents
SCD is serious and can cause complications. Regular primary care and specialty care visits are essential to improving quality of life

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What is Sickle Cell Trait (SCT)?

Sickle cell trait (SCT) is a type of hemoglobinopathy or an inherited blood disorder. It affects between 1 and 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.

SCT can never turn into SCD. 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. 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 of having SCT include people of:

  • African,
  • Hispanic,
  • South Asian,
  • Southern European, or
  • Middle Eastern descent.

How is 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 will have SCT and 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.

Diagram of how sickle cell trait is inherited. It shows the same information that was written in the above bullet points

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How can SCT impact a person's health?

Although 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, and
  • Blood in the urine (hematuria).

What are other kinds of hemoglobinopathy traits? 

Hemoglobinopathies are a group of disorders passed down through families in which there is abnormal production or structure of the hemoglobin molecule. The most commonly known hemoglobinopathy is SCD. Besides SCT, there are two kinds of thalassemia trait: alpha thalassemia trait and beta thalassemia trait. Like SCT, people with alpha or beta thalassemia traits have inherited one copy of the thalassemia gene and do not have a disease, and the trait cannot become disease. Both types of thalassemia trait can cause the size of the red blood cells to be smaller than normal, which looks like iron deficiency anemia, but it does not require treatment. 

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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.​

​​Understanding Sickle Cell Programs in Maryland

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

​The program follows ne​wborns, 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. 
 
  • Self-Referral- The SCD Follow-Up Program provides support and resources to babies born with SCD in Maryland. However, families with children with SCD, who were bor​n in other states are welcome to enroll. Please complete this form and Program Staff will contact you. Click here or on the link below to complete the self-referral form. ​​

​How can I contact the Sickle Cell Follow-up Program? 

Call (410) 305-9891 for more information or 

Email mdh.sicklecelldiseaseprogram@maryland.gov​

Helpful Programs​

​​Maryland uses grant funding (special money for health projects) to pay for these services:
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Trait Notification Program

Your new baby born in Maryland was tested for many health conditions. This program helps you understand those results.

  • Who runs it: This program is a joint project of Maryland Department of Health (MDH) and the Maryland Sickle Cell Disease Association (MSCDA).

  • Who it's for: Parents of babies with sickle cell trait.

  • What it does: If your baby has a "trait" (which means they carry the gene but aren't sick), the program sends you a letter and calls you to explain what it means.

  • Why it matters: It helps you learn about your health and your baby’s future.

  • Contact: Shanetta Richardson, HSA, CHW Trait Notification Program Navigator at 667-300-9987 or [email protected]

Trait Testing

This program offers trait testing and counseling. 

  • Who runs it: Howard University

  • Who it's for: Family members that don’t know if they have sickle cell trait

  • What it does: Provide trait testing and explain the results to you 

  • Where to go: Monthly testing in many Maryland counties and in D.C.

  • Contact: Call 202-806-2914 or email [email protected]

Reminders for Stroke Risk Identification: Transcranial Doppler (TCD)

This program helps you keep on track with scheduling your child with sickle cell disease for their yearly TCD screening. Your child with sickle cell disease may need a special ultrasound called a TCD scan. This scan checks the blood flow in the brain to see if your child has a high risk for stroke.

  • Who runs it: This program is a joint project of Maryland Department of Health (MDH) and Johns Hopkins University (JHU).

  • Who it's for: Kids between 2 and 16 years old with certain types of sickle cell disease.

  • What it does: This program helps you make sure your child gets this important test on time.

  • Why it matters: If you find out early that your child has a high chance of having a stroke, doctors can start treating them right away. 

  • Contact: Email [email protected] or call 410-614-0052

Help in Your Community

This program connects you with a Community Health Worker (CHW). These are people who live in your area and help you manage your health.

  • Who runs it: SCORE (Sickle Cell Outreach, Resources and Engagement) 

  • How they help: They help you find doctors, learn how to take your medicine, and manage your daily life with sickle cell disease.

  • Who it's for: Anyone in Maryland living with sickle cell disease. You can sign yourself up!

  • Contact: Visit https://sicklecellchw.org/ or email [email protected].​​

Resources

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Office of Children and Youth with Specific Health Care Needs

201 West Preston Street - Baltimore, MD 21201

Tel (410) 767-6730   Fax (410) 333-5047​