Sickle cell is an inherited condition that is passed down from your parents the same way people get the color of their eyes, skin and hair. There is no way to catch sickle cell – it is not contagious.
- Sickle cell begins with hemoglobin, the part of the red blood cell that carries oxygen. People with sickle cell have a type of hemoglobin that when it releases oxygen, it clumps together on one side of the red blood cell, causing the cell to sickle or become banana-shaped.
- Sickle cell affects about 100,000 people in the United States alone. People of African descent make up 90% of the population with sickle cell in the U.S. It also affects people of Hispanic, South Asian, Southern European and Middle Eastern ancestry.
How Do Sickled Cells Affect The Body
- Sickled red blood cells are stiff and sticky and don’t move freely throughout the blood vessels.
- Sickled red blood cells can pile up and block blood flow like a traffic jam, keeping healthy red blood cells carrying oxygen from getting where they need to go. This may prevent your organs from getting the oxygen they need.
- Because sickled red blood cells break down, there are fewer and fewer in the body to carry oxygen. When there are too few red blood cells carrying oxygen, anemia can result, which causes people to feel weak and tired.
Sickle cell disease changes over time, impacting your overall health. The long-term impact of sickle cell can occur 24 hours a day, 7 days a week and 365 days a year, even when pain is not felt.
Sickle cell is present from the start of life — you are born with it. It’s hard to know how it will behave in newborns. Infants usually don’t have symptoms in the first few months of life because the fetal hemoglobin produced before birth protects the red blood cells from sickling. A baby may start to have symptoms by six months of age. If you notice any symptoms, be sure to discuss them with your doctor.
Symptoms In Babies & Toddlers:
- A yellowish color of the skin (jaundice) or whites of the eyes (icterus), which occurs when a large number of red blood cells break apart
- Fatigue or fussiness because of anemia
- Painful swelling of the hands and feet (dactylitis)
- Not making enough red blood cells (anemia)
- Blood getting trapped in the spleen (acute splenic sequestration)
- Frequent infections
Most of the symptoms of sickle cell are related to complications of the disease. Some, such as fatigue, anemia, pain episodes and bone problems, can occur at any age.
Symptoms In Teens & Young Adults
- Teens and young adults may develop leg ulcers, avascular necrosis (death of bone tissue due to lack of blood supply), acute chest syndrome, and eye damage.
Symptoms In Adults
- Adults generally have pain crises caused by an injury to a bone, muscle or internal organs.
Living with Sickle Cell Disease
Prevent infections
Common illnesses like the flu can be dangerous when you have sickle cell. Practice good hygiene daily with hand-washing and food safety.
Develop healthy habits
Hydration and nutrition are very important for people living with sickle cell. Staying well-hydrated may help prevent dehydration (when one has too little water in the body) — which can be important as dehydration may lead to a pain crisis. It’s especially important to drink plenty of water before, during and after exercise or physical activity. Eat a well-balanced diet with plenty of calcium-rich foods like low-fat milk, yogurt, cheese, leafy green vegetables and calcium-fortified foods like soy milk, orange juice and tofu. It can help to add nutrient-rich, high-calorie foods like dried fruit, nuts and smoothies to your diet as well.
Manage fatigue
To help with fatigue, it is important to practice a good sleep routine, which means building healthy habits that support sleep. Some of these habits include:
- Limiting naps to less than 30 minutes
- Limiting caffeine to the morning
- Having a bedtime routine that you follow every night
- Making your bedroom pleasant, dark and as free of distractions as possible
Maintain a balanced body temperature
Try not to get too hot or too cold. Physical activity should be part of your life, but don’t overdo it. Listen to Dalilah and Mekhi talk about how they pay attention to their bodies.
Get support
- Your family and friends can help you check your health and be there to listen to you. Even if you’re the only one in your family with sickle cell, like Dalilah, your family can still help.
- You may want to find a group or community organization that can provide information and support (you can see a list of groups here). Talking with people who know what you’re going through can make all the difference. It can provide a network of people to learn from.
Talk with your healthcare provider about clinical studies that might be right for you
- New clinical studies about sickle cell are starting all the time. Ask your healthcare provider whether any studies might be right for you.
Pain Management
- The severity of pain caused by sickle cell can range from no pain to mild pain to severe pain. Likewise, the methods to relieve pain also can be different. Here are some good general rules to follow:
Talk with your healthcare provider
- Discuss your symptoms and create a plan to help relieve your pain. This may include medicine and other relief methods, including heating pads or physical therapy.
For more information visit www.sicklecellspeaks.com.