Sickle cell disease is a type of red blood cell disorder. Healthy red blood cells are round and flexible, so they travel quickly through the blood cells. However, in people with sickle cell disease, a genetic mutation inherited from their parents causes the red blood cells to take on a sickle or crescent shape. They also have a more rigid structure and are prone to sticking to blood vessel walls, so blood flow becomes disrupted or blocked. Sickle cells even die earlier than healthy red blood cells do, resulting in a low red blood cell count or anemia.
Symptoms of sickle cell disease start to show up as early as six months of age, and the condition will require management throughout one’s lifetime. Bone marrow transplant can be an effective cure for sickle cell disease, though it is not realistic for many people. Because it is a very risky procedure, and the body may ultimately reject the transplant, few people with sickle cell pursue this option.
Because symptoms of sickle cell can vary from mild to severe, treatment is often focused on managing the presented symptoms and preventing the development of complications.
Patients with sickle cell are often prescribed drugs for different concerns.
These medications often have side effects, so it’s important to have a specialist assess if they are the best treatment option.
Healthy red blood cells usually last 120 days, but sickle cells only last for up to 20 days. The shorter turnover creates a red blood cell shortage. With fewer red blood cells, the body receives less oxygen. Patients with sickle cell may experience fatigue, jaundice, difficulty in breathing, elevated heart rate, and developmental delays in children.
Blood transfusions are used to treat anemia in severe cases. However, multiple transfusions pose a risk of iron overload, so additional therapies may be needed to manage iron levels.
When sickle cells cause blockages in the veins, these can cause episodes of pain that can last for weeks. According to the Centers for Disease Control and Prevention, this can be prevented by staying hydrated and avoiding temperature extremes and high altitudes. Treatment consists of pain medications like ibuprofen and aspirin, but in severe cases, opioids and hospitalization may be required.
These blockages may also cause the hands and feet to swell, usually accompanied by a fever. The condition is called dactylitis and is generally treated with pain medication and increased fluid intake.
Patients with sickle cell disease are more vulnerable to infections because sickle cells can damage the spleen. Vaccines play an important role in disease management, including regular childhood vaccines and yearly flu shots. Children and some adult patients may be prescribed to take penicillin daily to reduce the risk of contracting severe infections, particularly if the spleen is removed as a preventive measure.
Though not all sickle cell disease patients may qualify for the curative bone marrow transplant, available treatments can effectively manage symptoms and prevent further complications.
PicnicHealth is supporting new research on sickle cell disease. Learn more by visiting PicnicHealth.com.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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