Sickle Cell Education & Support

Is it in your genes?

What is sickle cell?
Sickle CellsSickle cell is one condition out of a group called hemoglobinopathies. The condition occurs when proteins called hemoglobin, used by blood cells to carry oxygen from the lungs to other parts of the body, change from round to 'sickle' shape and have difficulty passing through small blood vessels . Everyone inherits two copies of the hemoglobin gene - one from mom and one from dad. When the gene is changed, it cannot work properly.

NCI Sickle Cell Initiative
NCISCI Conferences

For more information,
please call

574-647-1370 or
Toll Free 877-647-1370


People who inherit ONE changed gene are carriers and have a condition known as Sickle Cell TRAIT. 

Those who are carriers usually do not have health problems caused by the condition, but do have a much higher chance of passing the trait/disease on to their children.

People who inherit TWO changed genes have Sickle Cell DISEASE. People with sickle cell disease can have health problems including pain, infections, and damage to the body’s organs. When the sickle cells get “stuck” in the body, a person can have an episode or crisis.

Who is affected by sickle cell?
Sickle Cell Disease is a Global Public Health Issue. In the United States people are often surprised when they learn that a person who is not African American has sickle cell disease.

Hands on globe

The condition originated in at least 4 places in Africa and in the Indian/Saudi Arabian subcontinent. It exists in all countries of Africa and in areas where Africans have migrated. It is most common in West and Central Africa where as many as 25% of the people have sickle cell trait and 1-2% of all babies are born with a form of the disease. Sickle Cell Trait and Disease are also found in Italian, Sicilian, Greek, Turk, Arab, Asian, Indian and Hispanic families.

It is most common in West and Central Africa, but approximately 70,000 - 100,000 individuals in the United States have sickle cell disease and 3 million have sickle cell trait. With an estimated population of over 270 million, about 1,000 babies in the US are born with sickle cell disease each year.


Signs & Symptoms

Sickle Cell Disease is dangerous because it can cause other serious medical problems. The disease causes different problems in different people. Symptoms may look like a normal illness, but in someone with Sickle Cell - left untreated - they can be deadly. The most common problems your child may have because of sickle cell disease are:

Spleen Problems | Hand-foot Syndrome | Anemia | Delayed Growth | Pain | Stroke
(Click on the condition for more detailed information)

There are other conditions and symptoms stemming from Sickle Cell: General Infections, Pneumonia, Kidney and Urine Problems, Gallstones & Priapism. You can find out more about these issues by following the Resource links below and from your physician. If you've never been tested and told you don't have Sickle Cell, give the Initiative a call and get peace of mind. There is no downside to being certain - so don't bet your life.

Additional Resources

Sickle Cell and Athletics

Everyone should know their sickle cell trait status. If unknown, individualized voluntary testing for sickle cell trait should be considered. If testing is performed, it must always be accompanied by education and counseling on the health implications of a positive or negative test, as well as genetic counseling. The athlete should be encouraged to share this information with medical professionals and coaching staff, as they would with any other piece of medical information.

Even though sickle cell trait occurs in eight to ten percent of U.S. African-American population, it is present in athletes at all levels of competition and ethnicities, including professional and Olympic.

  • Sickle Cell Trait is not a barrier to exercise or participation in sport.
  • Exercise and sport are safe and, in fact, may be... protective in individuals with sickle cell trait.
  • Serious medical problems associated with sickle cell trait are rare, even during intense athletic training, practice and competition; however, athletes with sickle cell trait have experienced significant physical distress, collapsed and even died.
  • Problems... occur primarily with intense physical exertion when a coach or other individual... push[es] athletes to extreme physiologic limits or when an individual exercises intensely in the setting of illness (even relatively mild illness) or ...stimulant use.
  • Hydration can counteract or improve hematologic parameters in exercising individuals with sickle cell trait
  • Paying careful attention to and ensuring adequate hydration may reduce clinical risk
  • Sickle cell trait has been linked to an increased risk of exercise-associated sudden death in individuals undergoing intense physical exertion, and possibly rhabdomyolysis.
  • Exercise-associated sudden death in individuals who have sickle cell trait most commonly occurs in those undergoing intense physical exertion such as military recruits in basic training and football athletes during conditioning workouts; although, it can occur in other sports and activities as well.

Individuals with SCT should recognize variable signs and symptoms of physical distress. These may include: muscle “cramping” pain with weakness, while notably the muscles are usually not tense or hard, especially in the back or lower extremity; hyperventilation or difficulty to catch one’s breath; other muscle pain; abnormal general weakness; or undue fatigue.

Coaches should conduct appropriate sport-specific conditioning based on sound scientific principles and be ready to promptly intervene when athletes show signs of distress. Individuals should be allowed to self-limit their intensity and discontinue exercise when experiencing unusual fatigue and/or physical distress.

-ACSM and NCAA Joint Statement: Sickle Cell Trait and Exercise


In the News...

Watch our video, Living With Sickle Cell

Get the Flash Player to see this player.

More Videos

Read More


Referral & Resource Information


Use the arrow on the top right to limit the events in the calendar above.



307 N Michigan Street • 3rd Floor • South Bend, IN 46601

574-647-1350 •  574-647-1351 fax


Support healthy brain development
Support healthy brain development

BrainWorks translates neuroscience into easy-to-understand strategies for improved health, good decision making, and overall well-being throughout your life. Visit us to play brain games, participate in online meditations, or register for brain health presentations and webinars.

Visit the Health Discovery Center
Visit the Health Discovery Center

The Health Discovery Center provides computers, a health reference library and a variety of educational materials in a relaxed and quiet setting. Learn from our nursing education staff in free, confidential sessions.

Memorial HealthWorks! Kids' Museum
Memorial HealthWorks! Kids' Museum

Interactive children's health education center in downtown South Bend, infectiously contaminating kids to learn, have fun and make great life choices!