Dallas Sickle Cell Organization offers information and resources to help with concerns and spread awareness about sickle cell disease and sickle cell trait in a way that is inspiring and empowering.
What is Sickle Cell Disease (SCD)?
(Also known as Sickle Cell Anemia, Hemoglobin S or SS disease, Sickling disorder due to hemoglobin S)
Sickle cell disease is a group of inherited red blood cells disorders and it occurs when a person inherits two sickle cell genes, one from each parent. sickle cell disease directly affects the hemoglobin cells in the blood. These cells carry oxygen around the body, so they are very important for keeping other areas of the body healthy. The abnormal sickle-shaped hemoglobin cells associated with SCD do not last as long as normal hemoglobin cells. This leads to a lower number of healthy red blood cells in the bloodstream at any one time. This can cause problems in nearly any area of the body although; there are effective treatments that can reduce symptoms and prolong life. It is therefore important for people with SCD to be regularly screened by a doctor.
Sickle cell disease affects people of every background. According to the Centers for Disease Control and Prevention (CDC), people of sub-Saharan African descent are most likely to have the gene for SCD. It is also more common in South and Central America than in other areas of the Western Hemisphere.
Saudi Arabia, India, Turkey, Greece, and Italy also experience a higher percentage of SCD cases than other areas. In the United States, SCD affects approximately 100,000 people. the United States, most people with sickle cell disease are of African ancestry or identify themselves as black.
There are a few direct symptoms of SCD such as:
- Sickle cell crisis. A sickle cell crisis is a sudden episode of severe pain in an area of the body.
- Acute chest syndrome is another serious event that often requires care in the intensive care unit of the hospital. Acute chest syndrome is usually caused by blocked blood vessels in the lungs, but can also be a secondary symptom of infection.
- Swollen hands and feet
- Jaundice, which is the yellowing of the skin and whites of the eyes
- Kidney problems
- Spleen problems
- Gallbladder disease
- Painful, prolonged erections in men
- Bone and joint problems
- Serious infections
- Leg sores
- High blood pressure in the lungs
- Heart failure
- Eye disease
How to test for Sickle cell disease (SCD)?
All that is required is a simple blood test to see if someone has the condition. It is usually recognized at birth with newborn screening tests in the U.S., but not all countries check newborns.
SCD is genetic therefore; anyone with a genetic history of sickle cell disease should have a discussion with their doctor if they are deciding to have children.
What is sickle cell trait (SCT)?
Sickle cell trait (SCT) is an inherited blood disorder that affects the red blood cells. People with SCT have inherited one gene for normal hemoglobin and one for sickle hemoglobin, inheriting only one abnormal gene is what makes SCT different from sickle cell disease (SCD). Most people who have SCT have no medical problems as a result of the condition. It does not usually have any symptoms and cannot develop into SCD.
SCT does not usually cause health problems. However, it is important to be tested, as a person with SCT can pass on their abnormal gene to their child if precautionary measures are not taken.
In very rare cases, people with SCT can have some symptoms such as:
- blood in their urine
- pain or discomfort at high altitudes
- problems exercising in hot, humid weather
Health & Wellness
Living with sickle cell disease can be a challenge the severity of the disease varies widely from person to person but there are steps you can take to live the healthiest life possible.People with sickle cell disease can live full lives and enjoy most of the activities that other people do although; early diagnosis and regular medical care to prevent complications also contribute to improved well-being.
The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible.
Find Good Medical Care:
- Sickle cell disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems.
- Often the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.
Get Regular Checkups:
- Regular health checkups with a primary care doctor can help prevent some serious problems.
- Babies from birth to 1 year of age should see a doctor every 2 to 3 months.
- Children from 1 to 2 years of age should see a doctor at least every 3 months.
- Children and adults from 2 years of age or older should see a doctor at least once every year.
- Common illnesses, like the flu, can quickly become dangerous for a child with sickle cell disease.
- The best defense is to take simple steps to help prevent infections.
Learn Healthy Habits
- People with sickle cell disease should drink 8 to 10 glasses of water every day and eat healthy food. Try not to get too hot, too cold, or too tired.
- Children can, and should, participate in physical activity to help stay healthy. However, it’s important that they don’t overdo it, rest when tired, and drink plenty of water.
- Stay hydrated
Look for clinical studies
New clinical research studies are happening all the time to find better treatments and, hopefully, a cure for sickle cell disease. People who participate in these studies might have access to new medicines and treatment options. clinicaltrials.gov is a resource provided by the U.S. National Library of Medicine, it is a database of privately and publicly funded clinical studies conducted around the world.tools to explore 297,544 research studies in all 50 states and in 208 countries.
***Before participating in a study, talk to your health care provider and learn about the risks and potential benefits***
Find a patient support group or community-based organization that can provide information, assistance, and support. Dallas sickle cell organization is here to support you through this journey!
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Care & Support
Each person who has sickle cell disease should have a home treatment regimen that is best suited to their needs. The providers on the team usually help a patient develop a written, tailored care plan. If possible, the person who has sickle cell disease should carry this plan with them when they go to the emergency room.
Treatments are available that can prevent complications and lengthen the lives of those who have this condition. These treatment options can be different for each person depending on the symptoms and severity