Philadelphia, PA: This September 9th, 2021 from 2 pm -7 pm at 4000 Powelton Avenue, Crescent Foundation, a sickle cell…
Understanding Sickle Cell Disease
Sickle cell disease is the most common inherited blood condition. It affects red blood cells, which are responsible for carrying oxygen throughout the body via a protein called hemoglobin.
In people with sickle cell disease, a hemoglobin mutation causes red blood cells to lose oxygen. When red blood cells become deoxygenated, they become rigid and sickle shaped. This causes them to clump together, instead of flowing freely through small blood vessels. This can cause pain crises when oxygen doesn’t reach bone or muscles, or acute chest syndrome and stroke when oxygen doesn’t reach lung and brain tissue.
For those with sickle cell disease (SCD), living a full life is not only possible, it’s within reach. A foundation of healthy habits—whether it’s a well-balanced diet or introducing exercise into your routine—can help to better support your journey with sickle cell. Pair that with quality medical care, and you’re on your way to living an empowered life where you don’t just survive—you thrive.
Sickle Cell Trait (SCT) is not a disease. It means you’ve inherited the sickle cell gene from one of your parents, making you a “carrier.” Although you may not show symptoms of sickle cell disease (SCD), it’s important to determine your status with a simple blood test. From there, think about how having SCT affects you and how SCD can run in your family. Consult your doctor and/or a genetic counselor to discuss your family history and future. When you take these necessary steps, you are key in helping change the trajectory of the SCT community at large.
Treating those with sickle cell disease (SCD) requires a combination of skills. From addressing patient concerns with compassion and urgency to managing symptoms with a personalized treatment program, you are a key figure in the life of a patient with SCD. Often, children and adults with SCD rely on emergency rooms during pain crises. For many, this is unfortunately their only option for healthcare, especially when a patient has no access to a provider who specializes in SCD. You can change that.
Caring for a loved one with sickle cell disease (SCD) is both admirable and taxing. You are likely shouldering financial obligations and providing emotional support at a moment’s notice. Because of this immense dedication, caregivers like you are at risk of feeling isolated and all-consumed. But, know that you are not alone in this journey. Reach out to your provider to discuss ways you can cope or find support within an online group for caregivers.
You play a vital role in the life of a student with sickle cell disease (SCD). In order to support students with SCD, it’s important to educate yourself on the background of the disease. Taking the time to understand SCD overall can help you provide the best academic outcome for your students. For example, students with SCD need access to water throughout the school day to help prevent pain episodes, which also means they’ll need frequent bathrooms breaks. These small accommodations can make a world of difference for a child with SCD. To learn more about how you can help, take a look at.
Supporters like you are needed to make systemic changes in the way the world views and treats the sickle cell disease (SCD) community. Simply pledging support is not enough. Authentic allyship that starts with equity, equality and justice, is a lifelong commitment and requires you to step outside your comfort zone to amplify the voices of our community. Advocating for the SCD community can take many forms—whether that’s donating, educating, or volunteering. Find your lane and occupy it. #blacklivesmatter