Sickle cell disease can affect the whole body. Here are some of the providers you might want on your care team:

• Hematologist: A doctor who specializes in treating blood disorders like sickle cell disease. They can help with diagnostic tests, blood transfusions, medications and other therapies.
• Primary care provider (PCP): Even if you’re seeing a hematologist, it is still important to find and visit a PCP. They can help you manage other aspects of your health, keep you up to date on vaccinations and more.
• Ophthalmologist (eye doctor): Sickle cell can impact your vision. An ophthalmologist can help you address eye health issues before they become a bigger problem.
• Community health worker (CHW): CHWs who specialize in sickle cell disease play a key role in connecting you to health care providers, social services and more.
• Therapist: There is no shame in taking care of your mental health. Having a good therapist on your care team can help you handle the day-to-day stress of sickle cell disease.

Adult women with sickle cell disease should see a gynecologist regardless of if they plan to have children.

Did you know that, according to the Centers for Disease Control and Prevention, sickle cell warriors visit the emergency room two to three times a year on average for pain-related crises? Going to the ER can be a frustrating and scary experience, but preparing ahead of time can help make it easier.

• Know when to go: If you have a fever over 101 degrees, difficulty breathing, chest pain, abdominal swelling, severe headache, sudden weakness or loss of feeling and movement, seizure or a painful erection lasting more than two hours, you need to go to the emergency room.
• Have a grab bag ready: Keep anything you need to stay safe and comfortable at the hospital on hand. Make sure your medications are organized and easy to take with you. Keep copies of your medical records in the grab bag too.
• Prepare to advocate for yourself: Understand your condition so you can communicate about it when you are in pain – and/or have a trusted friend, caregiver or patient advocate on speed dial. You may want to create a folder of information (digitally or otherwise) with general information about sickle cell disease from trusted sources like SCDAA, the American Society for Hematology and/or the Centers for Disease Control and Prevention to share with the staff in the ER if they care unfamiliar with SCD.
• Start a relationship with your local member organization: SCDAA members organizations are advocacy experts and have resources that can help you get through emergencies. Your local member org may even be able to support you while you are in the emergency room. Connect with them today.

Teenage sickle cell warriors face lots of changes – at home, at school and in their health care. Making the transition from pediatric to adult care can be a complicated process. Learning how to take care of your own health is an important step toward independence. Learn more about how to make a safe transition into adult care.

• Communication is key: Caregivers and parents should begin getting their teen involved with their health care sooner rather than later. Explain their medications to them, teach them how to schedule appointments/order medications and show them how to advocate for themselves. If you’re a teenager getting ready to transition, start asking questions and ask your caregivers if you can begin taking a more active role in your care.
• Discuss health insurance: Health insurance can be confusing. Teach your teen about how your health insurance plan works and get them familiar with terms like deductible, co-pay and more. How long can your teen stay on your insurance plan? If they get their own health insurance plan through an employer or otherwise, how will that impact their care? Answering these questions can help your teen transition smoothly.
• Get support from your community: Did you know there are transition-specific support groups available to help you start your adult life on the right foot? Consider connecting with one of these groups to connect with others and learn from their journeys. Reach out to your local SCDAA member organization to learn about the options in your area.

If you are having trouble accessing or finding appropriate care for sickle cell disease, you are not alone. SCD is a chronic and rare condition, which means it can be harder to find specialists and navigate treatment options. Learn about common barriers to treatment and how to overcome them.

• Location: Many people have trouble finding a specialist near them or cannot travel to their provider’s location. Virtual visits are a great tool to help bridge the gaps to care in these situations. Ask your primary care physician for a recommendation or reach out directly to a hematologist or sickle cell center and ask about virtual appointments. Some sickle cell specialists will also travel within a specific area to provide care to the community. Connect with your local member organization to learn more about your options.
• Financial: Sickle cell treatments are expensive, but the cost of SCD also includes lost wages for warriors and caregivers who must take time off to manage the condition. Some community funds offer support to sickle cell warriors and their families. A sickle cell diagnosis may also meet the criteria for federal disability assistance.

Although we still have a way to go, research has come a long way in developing effective sickle cell treatments that can greatly improve your quality of life.

Blood transfusions have been used to treat sickle cell disease for decades. During this procedure, donated blood is absorbed into your system through an IV tube. You may receive regular transfusions to reduce the risks of stroke, pain episodes and more. In an emergency, you may receive a blood transfusion to treat stroke, acute chest syndrome, multi-organ failure or another life-threatening complication. A blood transfusion can take one to four hours to complete.

Since mild to moderate pain may be experienced regularly, OTC pain relievers can play an important role in your treatment. Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Motrin, Advil), aspirin and/or naproxen sodium (Aleve) can help relieve mild to moderate pain. Acetaminophen (Tylenol) may also help. If you are in severe pain or the pain will not go away, please call your doctor and/or visit the emergency room for help.

Thanks to scientific advancements in the last few decades, a variety of prescription medications have been developed that can help decrease sickling, reduce the number of pain crises and lead to an improved quality of life. Your physician may prescribe one or more of the following medications:

• Hydroxyurea (Brand names: Siklos, Droxia)
• Endari (Active ingredient: Glutamine)
• Adakveo (Active ingredient: Crizanlizumab)

A bone marrow transplant is one of the few methods that can cure sickle cell disease; however, for most members of the SCD community, it is not a viable option. The procedure can be risky, and a well-matched bone marrow donor can be difficult to identify. The decision to move forward with a bone marrow transplant depends on many factors, including your age and the severity of your symptoms. A bone marrow transplant works by replacing the stem cells of the sickle cell patient with the stem cells of a healthy donor. The new stem cells produce red blood cells with healthy hemoglobin instead of sickle hemoglobin.

Two gene therapies were approved in Dec. 2023 by the Food and Drug Administration (FDA) to treat sickle cell disease: exagamglogene autotemcel and lovotibeglogene autotemcel. These treatments are considered potentially curative. For full gene therapy resources, click here.

HELPFUL LINKS

None of the above treatments would be possible without clinical trials. Sickle cell warriors who participate in clinical trials can gain access to innovative treatments (like gene therapy) before they are available to the public. At the same time, these participants help push our scientific understanding of sickle cell forward and play a crucial role in creating a pain-free future. To learn more about clinical trials and how to get involved, visit our C.A.R.E.S. Consortium.

Self-care is a popular concept that is especially important for people with sickle cell disease. Sickle cell disease crises can happen unexpectedly, but they can also occur in response to external factors like fatigue, exercise, environment and more. Here are some tips for staying healthy with sickle cell.

Your body functions best when it has the nutrients it needs to thrive! Focus on eating whole foods like fruits, veggies, whole grains and proteins. Try to leave processed foods like microwave meals and prepackaged snacks on the shelves and break your fast-food habit (if you have one). If you are struggling to find the time to cook, or need strategies to grocery shop on budget, the USDA’s MyPlate program is a great place to start learning new healthy eating strategies.

Dehydration is a common pain crisis trigger. Drinking 8-10 glasses of water a day can help you to stay hydrated. Some strategies to increase your water intake include:

• Getting a water bottle with benchmarks so you can visualize your goals
• Keep extra water bottles in your car, bag or backpack so you have them on the go
• Make it fun by using flavored powders or infusing your water with fruit
• Swap dehydrating caffeinated sodas and coffee with sparkling water or herbal tea

Exercise can be complicated for people with sickle cell disease. A healthy exercise routine is important, but overexerting yourself can cause a pain crisis. Be mindful of your limitations. Choose gentle movements like walking, yoga, biking and dancing over high-intensity activities. Go slow and take breaks when you need to.

Cold temperatures can also trigger a pain crisis. While you can’t always avoid the weather, you can be prepared for it. Keep an eye on the forecast and plan to stay home if it’s too cold or windy. Dress in layers and keep a sweater or a jacket in your car. Use space heaters and blankets to keep yourself warm indoors.

Stress is an inevitable part of life, but it has a huge impact on your body. It’s no wonder that periods of high stress can cause your symptoms to flare. Integrating stress relief strategies into your daily routine can help you stay healthy. Everyone is different, so try a variety of tactics. Some ideas include:

• Practicing mindfulness (try these guided meditations and breathworks created specifically for sickle cell warriors)
• Gentle exercise and movement
• Aromatherapy
• Spending time with friends and family
• Engaging in hobbies
• Talking to a counselor or therapist

Illnesses like the common cold may be no big deal to some, but it can be the gateway to a crisis for someone with sickle cell. Pay extra attention to your health and take necessary measures to avoid getting sick. Wash your hands regularly, keep hand sanitizer nearby and disinfect your space often. You’ll also want to make sure to stay up to date with your vaccines, including your annual flu shot and COVID-19 boosters (if needed). Vaccines are safe, and they are one of the best tools we have to prevent potentially life-threatening illnesses. Learn more about the importance of vaccinations.

Sickle cell disease is a chronic condition, which means that it can impact every aspect of your day-to-day life. Luckily, there are support systems available to help you manage these disruptions.

If you are a parent to a child with sickle cell, you may be concerned about how this condition will impact his or her education. Make sure to communicate with your child’s teachers and school administrators about his or her individual needs. You may also want to consider applying for a 504 plan or an Individualized Education Program (IEP), which will allow you to access accommodations that can make school easier for your child. Last but not least, make sure to talk to your child about what to expect at school, how to handle pain crises and offer support as they make new friends and gain independence.

Sickle cell disease can also cause disruptions at work. Everyday symptoms like pain and fatigue can impact your work performance. Doctor’s appointments, flare-ups and pain crises may require you to take additional time off. Deciding whether to disclose your condition to your employer is a personal decision; however, rest assured that sickle cell disease is covered by the Americans with Disabilities Act and cannot be used to discriminate against you. It is within your right to request reasonable accommodation at work so you can stay healthy. You may also qualify to take time off through the Family and Medical Leave Act (FMLA). Finally, if your condition is especially severe, you may be eligble to receive disability benefits.

Many sickle cell warriors and caregivers find comfort in connecting with other people who understand what they are going through. There are a variety of organizations dedicated to supporting people with sickle cell disease, and many online communities have message boards that you can use to reach out to others. We also suggest that you connect with one of SCDAA’s member organizations to learn about and take advantage of resources available near you.