Sickle Cell Awareness Month

Back To Health & Wellness Campaigns

What is Sickle Cell Disease?

Sickle cell disease (SCD) is a genetic disorder that causes red blood cells to become crescent shaped. 

During a sickle cell crisis, red blood cells change shape and become stiff like crescents (sickled). The abnormal cells are less flexible. They can block blood flow and lead to a number of complications. 

Common Symptoms 

  • Painful episodes
  • Anemia
  • Fatigue
  • Swollen hands and feet
  • Joint pain
  • Organ damage

Common Triggers of a Sickle Cell Crisis

  • Physical or Psychological Stress
  • Extreme weather – hot or cold
  • Pain
  • Alcohol
  • Tobacco 
  • Dehydration
  • Infection
  • Strenuous exercise
  • High Altitude
  • Certain Medical Conditions

Learn more about SCD, health complications and treatments.

Living a Full Life

People who have sickle cell disease can live full lives and enjoy many of the activities that other people do. Take the following steps to manage health and help relieve symptoms.

  • Receive routine follow-up care.
  • Know what to do in a sickle cell crisis.
  • Adopt a healthy lifestyle.
  • Avoid situations that may trigger a crisis.
  • Take care of your mental health.

Learn more about living a full life with sickle cell disease.

Stigma

People who have SCD often face stigma. Stereotypes and misconceptions are commonly placed on people with this disease. 

What Does SCD Stigma Look Like?

Healthcare Disparities: Patients are wrongly viewed as ‘drug-seeking’ and embellishing pain to receive narcotics. 

Lack of Awareness: Limited knowledge in healthcare and the community.

Cultural and Racial Biases: SCD is often associated with African Americans and can lead to racial prejudice. 

Gender-Based Blame: Women are often unfairly blamed for the genetic transmission of SCD.

Genetic Blame: Parents are often unfairly blamed for the genetic transmission of SCD.

Impacts of Stigma

  • Lack of adequate or delayed medical care for SCD patients.
  • Discrimination and prejudice towards people who have SCD.
  • Internalized stigma for individuals who have SCD. That can lead to isolation and mental health challenges.
  • Reduced quality of life for people who have SCD. 
  • Parental guilt for carrying the sickle cell trait and passing it on to their children.
  • Resistance to genetic testing and family planning.

Fighting SCD Stigma

For Individuals Living with SCD

  • Empower yourself with knowledge to better manage your health.
  • Find support through a support group or counseling.
  • Advocate for yourself, communicate your needs to your loved ones and healthcare team. 
  • Work with your healthcare team to create the best care plan for you. 
  • Prioritize your well-being by incorporating self-care.

For Healthcare Providers

  • Believe and validate your SCD patients.
  • Build trust through effective communication.
  • Offer individualized treatment plans that focus on the whole patient.
  • Address mental health needs and supports.

For the Community

  • Increase awareness through education.
  • Support research, initiatives and organizations that help combat stigma.
  • Create an inclusive community and safe space for people with SCD. 

Resources

 

Source: National Heart, Lung and Blood Institute