Coulson Sickle Cell Foundation of S. L.

07/14/2025

Adults with SCD experience a range of symptoms and potential complications, including pain crises, organ damage, and increased risk of infections. While SCD can impact quality of life, many adults with the condition lead relatively normal lives with proper management and treatment.

07/14/2025

What is Hydroxyurea?

Hydroxyurea is a medicine that can help people who have sickle cell disease. It keeps blood cells round and flexible, so they flow better and deliver oxygen to the body more easily. This means less pain and fewer trips to the hospital.

How does Hydroxyurea help?

Hydroxyurea makes your red blood cells bigger. It helps them stay rounder and more flexible — and makes them less likely to turn into a sickle shape. The medicine does this by increasing a special kind of hemoglobin called hemoglobin F. Hemoglobin F is also called fetal hemoglobin because newborn babies have it.
Increases Fetal Hemoglobin (HbF):
Hydroxyurea stimulates the production of HbF, which is the form of hemoglobin found in newborns. HbF is more resistant to sickling, helping to prevent the complications associated with SCD.

What Happens in Sickle Cell Disease?

Healthy red blood cells are soft, flexible, and round. Sickle cell disease makes red blood cells become sticky, hard, and C-shaped. The sickle cells get stuck and block the blood flowing inside small blood vessels. This can be painful and lead to other problems that need to be treated in a hospital.

How Does Hydroxyurea Help People With Sickle Cell Disease?
Hydroxyurea (hy-drok-see-yer-EE-uh) helps the body make a type of hemoglobin that helps keep red blood cells round. Hemoglobin is the protein inside red blood cells that carries oxygen to the body. Round and flexible red blood cells work better and last longer. So people who take hydroxyurea can have more energy, and less pain and anemia. They often spend less time in the hospital.

06/25/2025

Caregivers for people living with sickle cell disease provide physical, emotional, and sometimes financial support. They can be parents, siblings, spouses, friends, children, and extended family. I think healthcare professionals can be caregivers, as well.

What is the role of a sickle cell disease caregiver at home?

Taking care of someone with sickle cell disease (SCD) can be both rewarding and challenging. There may be many things to remember to keep your loved one healthy, and seeing a loved one sick or in the hospital is difficult.

The disease can also interrupt your daily life and put a large emotional burden on caregivers. Make sure you take care of your own mental health while providing care for your loved one.

What is the role of a sickle cell disease caregiver at home?

The first thing to do as a caregiver for a child or loved one with SCD is to educate yourself on the disease. It is good to know what symptoms and complications are possible and how to prevent and treat them. It is also important to make sure they see the doctor regularly and get the tests and procedures they need.
The most common complication for people with SCD is acute pain episodes.

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Talk to your loved one’s doctor about your role in their pain management plan. When an acute pain episode starts, you may be responsible for:

Giving them certain pain medicines

Making sure they drink water

Helping them with heating pads, warm baths, or massage

Deciding when to go to the ER for severe pain

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The pain management plan will also include their triggers of sickle cell pain. You can help your loved one avoid pain crises by:

Making sure they stay hydrated

Keeping them cool on very hot days

Making sure they dress warmly on cold days

Preparing for travel

06/18/2025

Every year 'World Sickle Cell Day' is celebrated on 19 June.

This year’s global theme is “Global Action, Local Impact: Impowering Communities for Effective Self-Advocacy.”
This day was started by the United Nations General Assembly in the year 2008, so that sickle cell disease can be accepted as a serious health problem at the global level and efforts to deal with it can be strengthened.

06/11/2025

World Sickle Cell Day is an international awareness day commemorated every year on 19 June, to alert the global public about sickle cell disease. Various global and local organisations come together during this day to promote awareness campaigns and activities which recognise the necessity of the early diagnosis of sickle cell disease, its treatment, and preventive tips to avoid the ailment.

06/11/2025

June 19th is designated as World Sickle Cell Day, an international awareness day aimed at increasing public knowledge and understanding of sickle cell disease and its challenges.

This day is recognized by the United Nations as a time to raise sickle cell awareness both nationally and internationally. The day encourages actions to promote awareness, support research and innovation, and reduce stigma and discrimination associated with sickle cell disease.

World Sickle Cell Day is observed annually on June 19th with the goal of increasing public knowledge and understanding of sickle cell disease.

The day is a United Nations-recognized day to raise sickle cell awareness both nationally and internationally. The United Nations General Assembly passed a resolution in 2008 recognizing sickle cell disease as a public health hazard and one of the world's main genetic illnesses, calling for sickle cell disease awareness on June 19th each year.

The day serves to:

Increase awareness and understanding:
World Sickle Cell Day aims to educate the public about sickle cell disease and the challenges faced by patients and their families.

Support research and innovation:
The day promotes research into better treatments and management of sickle cell disease.

Reduce stigma and discrimination:
By raising awareness, the day helps reduce stigma and discrimination associated with sickle cell disease.

Promote prevention and early intervention:
World Sickle Cell Day emphasizes the importance of early detection and intervention to improve outcomes for individuals with sickle cell disease.

Foster solidarity and support:
It provides a platform for patients, caregivers, and support organizations to share experiences and resources.

06/05/2025

Infections and Sickle Cell Disease

Sickle cell disease (SCD) often causes spleen damage and other immune system problems. This makes people with SCD more likely to experience complications from infections.

People with SCD have a higher risk of infection from certain types of bacteria, especially pneumococcus. This can cause infections in many parts of the body, such as the lungs, brain tissue, ears, and joints. It can also trigger acute pain crises and acute chest syndrome.
The rate and severity of infections have decreased with the use of preventive antibiotics and vaccines. However, infections are still life-threatening for people with SCD. If you have symptoms of an infection, call your doctor immediately.

The rate and severity of infections have decreased with the use of preventive antibiotics and vaccines. However, infections are still life-threatening for people with SCD. If you have symptoms of an infection, call your doctor immediately.

People with SCD, especially infants and children, have a high risk for infections. Until the 1990s, up to 30 percent of children with sickle cell anemia in the United States died from infections. Infections can lead to life-threatening complications, such as pneumonia, acute pain crisis, and acute chest syndrome. Here are some infectious diseases that people with SCD commonly experience:

Pneumococcal disease

This is any infection caused by bacteria called Streptococcus pneumoniae, or pneumococcus. Before preventive measures were common, SCD made children 30 to 600 times more likely to develop pneumococcal disease. It is a common cause of lung infection (pneumonia). It can also cause ear and sinus infections, and infections of the tissue covering the brain and spinal cord (meningitis).

Respiratory syncytial virus (RSV)

RSV is a common cause of lung and respiratory tract infections. Most children are infected with RSV by age 2. In children without SCD, symptoms usually mimic the common cold. However, in children with SCD, RSV infection is linked to episodes of acute chest syndrome.

Haemophilus influenzae type B

This is a type of bacteria that can cause pneumonia and meningitis, as well as infections of the bloodstream, skin, and joints. Despite its name, it is not the cause of influenza or “the flu”.

Parvovirus B19

This is a common infection that is also called fifth disease or slapped cheek syndrome. In people with SCD, it can cause a complication called aplastic crisis. It happens when the bone marrow stops making new red blood cells. This leads to severe, potentially life-threatening anemia.

Other infections

People with SCD also have a higher risk of infections of the urinary tract, gallbladder, and other organs from other types of bacteria. In resource-poor countries, salmonella infection is a common cause of pneumonia, meningitis, and infant mortality.

06/01/2025

Staying Hydrated When You Have Sickle Cell Disease

When you live with sickle cell disease (SCD), it is important to drink plenty of water and other fluids. This helps you to stay hydrated. If you become dehydrated, your sickle cell symptoms may become worse.

People with sickle cell disease have a problem with their red blood cells. Their red blood cells contain an abnormal type of hemoglobin. Hemoglobin is the substance in the blood that carries oxygen from the lungs to other areas of the body. Instead of being round like normal red blood cells, their red blood cells look like a C-shaped farm tool called a “sickle.” These abnormal cells can have trouble getting through small blood vessels. They can get hard and sticky. Also, there is a constant shortage of red blood cells in someone with sickle cell disease.

When the abnormal blood cells block small blood vessels in the body, less blood reaches that part of the body. Eventually, these parts of the body can become damaged.

What happens when you become dehydrated?

When you use or lose more fluids than you take in, you become dehydrated.

This means your body does not have enough water and other fluids to carry out normal functions.

Just because you are not thirsty does not mean you are drinking enough water.

Many people, especially older adults, do not feel thirsty until they are already dehydrated.

Signs of dehydration often differ by age. In children, symptoms of dehydration may include dry mouth and tongue, no tears when crying, and no wet diapers for 3 hours.

In adults, signs may include extreme thirst, dark-colored urine, fatigue, and dizziness.

Dehydration is especially worrisome in people with SCD. When you have SCD and you are not well hydrated, your red blood cells can clump together. This can cause a condition called sickle cell crisis. During a sickle cell crisis, you can experience pain. The pain is mostly in the bones of the spine, arms, and legs.

Sickle cell crises can last from hours to days. You need medical treatment when you are having a sickle cell crisis. Staying hydrated can help prevent a sickle cell crisis.

What causes dehydration?

There are a number of reasons why you can become dehydrated. In some cases, dehydration occurs simply because you do not drink enough water because you are sick or busy.
Lack of access to safe drinking water can also lead to dehydration.

Tips for staying hydrated
When you have sickle cell disease, it is very important to stay hydrated. Keep bottle or cup of water near and drink from it throughout the day. Aim for 8 to 10 8-ounce glasses of water each day. Eating foods that are high in water, such as fruits and vegetables, can also help you get enough fluids.

Other tips for staying hydrated include:

Drink enough water and other fluids so your urine is light yellow or clear
If you are sick, be sure to drink extra fluids

Drink plenty of fluids before, during, and after you exercise or when it is hot out

Kids with SCD should have a water bottle with them during school or when they are on a playdate or other outing

Limit alcohol and foods that are high in salt
Both kids and adults should also limit sugary drinks like soda, juice, sports drinks, and flavored milks. Drinks with lots of sugar can reduce the amount of fluid your body retains.

These drinks also discourage the habit of drinking plain water and add empty calories to your diet.

06/01/2025

Hydration is crucial for managing sickle cell disease. Staying well-hydrated helps maintain proper blood flow, reduces the risk of sickle cell crises, and can alleviate some symptoms. Dehydration can worsen the condition by increasing the likelihood of sickling and vaso-occlusion.

Babies with sickle cell disease should be drinking water regularly from birth to prevent dehydration, which can trigger pain crises. While the exact amount varies based on individual needs and activity level, aiming for 8-10 glasses of water daily is a good general guideline for older children and adults. Dehydration can worsen sickle cell symptoms, so it's crucial to monitor fluid intake and increase it when needed.

For babies with sickle cell disease, maintaining proper hydration through drinking plenty of fluids, especially water, is crucial. This helps prevent dehydration, which can trigger or worsen pain crises, a key complication of sickle cell disease.

For individuals with sickle cell disease, maintaining adequate hydration by drinking plenty of water is crucial for preventing complications and managing the condition. Dehydration can trigger sickle cell crises and increase the risk of other issues. Therefore, it's recommended to drink at least eight glasses of water daily and increase intake during exercise or hot weather.

03/20/2025

Adolescents with sickle cell disease are living increasingly longer into adulthood. For this reason, transitioning patients must learn to take care of their own health. A transition program, like SCULPT, provides the continuity of health care and support patients need to successfully manage their own health care.

03/11/2025

Scholarship opportunities for those with Sickle Cell Anemia living in the USA

02/13/2025

People with sickle cell disease should consult their healthcare provider before trying to get pregnant. Some medications used to treat sickle cell disease may be harmful to a developing fetus.

Medications to avoid

Hydroxyurea: This medicine is often used to treat sickle cell disease pain episodes, but it's not recommended during pregnancy.

Angiotensin converting enzyme inhibitors and angiotensin receptor blockers: These should be stopped before pregnancy.

Other considerations, but consult your doctor or clinic

Folic acid: Take a high dose of folic acid (5 mg) every day throughout pregnancy to strengthen blood cells.

Aspirin: Take a low dose of aspirin (75 mg) every day throughout pregnancy to reduce the risk of preeclampsia.

Pain relievers: Avoid painkillers such as ibuprofen, as they can harm the fetus.

Food safety: Eat a balanced diet and follow steps for food safety to prevent foodborne illnesses.

Hydration: Drink plenty of water to stay hydrated.

Physical activity: Stay physically active, but ask your care team what types of exercises may be appropriate for you.

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