Recognizing sickle cell awareness day
Sickle Cell Awareness Day is observed all around the world on June 19th and 2020 marks the 10th annual observance. Children’s Minnesota hopes to increase public knowledge and understanding of sickle cell disease and the challenges patients, families and caregivers experience.
Shine the Light on Sickle Cell is a 24 hour awareness campaign created by Sickle Cell Disease Association of America and SiNERGe that encourages community-based organizations and individuals to shine a light on this disease.
“Community expertise and medical expertise are both important to caring for the sickle cell community and finding a cure” says Rae Blaylark, sickle cell patient health advocate at Children’s Minnesota.
We’re sharing more about sickle cell disease to help shine a light on this disease.
What is sickle cell disease?
Sickle cell disease is a genetic blood disease. When a person has sickle cell disease, their red blood cells are shaped like a sickle, or a ‘C’, while normal red blood cells are shaped like a disc. When red blood cells are shaped differently, it is difficult for them to move through small blood vessels and can get stuck, form clumps or block blood vessels. This can cause severe pain, infections and life-threatening damage to a person’s organs.
Sickle cell disease is most commonly seen in people whose families come from African or Caribbean countries. It also occurs at higher rates in many other places, including some Central American, South American, and Middle Eastern countries as well as in India, Greece and Turkey.
What are the symptoms of sickle cell disease?
Symptoms can range from mild to very severe, and most symptoms are linked to the anemia or pain cause by the condition. The most common symptoms are pain and fatigue. Other symptoms include:
- Chest pain.
- Cold hands or feet.
- Dizziness,
- Hand-foot syndrome (swelling in the hands or feet).
- Headache.
- Pale skin.
- Shortness of breath.
- Sudden pain throughout the body.
How is sickle cell disease diagnosed?
In the U.S., all babies are tested at birth for sickle cell anemia because early diagnosis can help protect infants with sickle cell disease from developing certain serious infections.
What medical problems could my child with sickle cell disease face?
When the red blood cells clump and cause pain, the event is called a sickle cell crisis. This may happen once every few years, once a year, or more frequently; the frequency will be different for each patient.
A sickle cell crisis can cause various medical complications throughout the body:
- Acute chest syndrome, which can lead to pulmonary arterial hypertension.
- Delayed growth and puberty.
- Gallstones.
- Eye problems, including vision problems and blindness.
- Infections such as pneumonia, meningitis, influenza, and hepatitis.
- Leg ulcers.
- Organ failure of one or more organs, such as a kidney, the lungs, or the liver.
- Priapism (painful, unwanted erections that can damage the penis and lead to impotence).
- Splenic crises (problems with functioning, swelling, or shrinking of the spleen).
- Stroke.
What does treatment look like for sickle cell disease?
Typically, treatment for sickle cell disease will focus on relieving pain, and preventing infections or complications. While there is no cure for sickle cell disease, patients may take medications, receive blood transfusions or undergo tests to help catch complications at an early stage.
Sometimes bone marrow transplants are a treatment option. When successful, bone marrow transplants don’t just treat sickle cell disease, but can offer a cure. However, bone marrow transplants are not appropriate for most sickle cell cases. Research into new treatments, such as improved bone marrow transplants and gene therapy, is ongoing.
Sickle cell care at Children’s Minnesota
Children’s Minnesota sickle cell program is a nationally recognized program that treats 90 percent of sickle cell patients in Minnesota.
“Children’s Minnesota sickle cell program has expertise in sickle cell disease, including patient care and research, and also influences cultural awareness–we bridge the gap,” explained Rae Blaylark. “When medical education and the community come together, we find a common ground for better outcomes.”
Our Hemoglobinopathy and Sickle Cell Program consists of a multidisciplinary health care team that aims to address each patient’s specific needs through the use of the most current diagnostic tools, the C.H. Robinson Infusion Center, preventative therapies and groundbreaking clinical research.
Family support services – like financial assistance and summer camp – are fundamental components of the Hemoglobinopathy and Sickle Cell Program.