It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at any hour, if there’s a problem. Be sure to find a place that will have access to your medical records or bring a copy. Go to an emergency room or urgent-care facility right away for: - Fever above 101° F - Difficulty breathing - Chest pain - Abdominal (belly) swelling - Severe headache - Sudden weakness or loss of feeling and movement - Seizure - Painful erection of the penis that lasts more than 4 hours Call a doctor right away for: - Pain anywhere in the body that will not go away with treatment at home - Any sudden problem with vision Abstract source

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. If you have SCD, there is a problem with your hemoglobin. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. With SCD, the hemoglobin forms into stiff rods within the red blood cells. This changes the shape of the red blood cells. The cells are supposed to be disc-shaped, but this changes them into a crescent, or sickle, shape. The sickle-shaped cells are not flexible and cannot change shape easily. Many of them burst apart as they move through your blood vessels. The sickle cells usually only last 10 to 20 days, instead of the normal 90 to 120 days. Your body may have trouble making enough new cells to replace the ones that you lost. Because of this, you may not have enough red blood cells. This is a condition called anemia, and it can make you feel tired.   Abstract source

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” People with SCD can live full lives and enjoy most of the activities that other people do. If you have SCD, it’s important to learn how to stay as healthy as possible. Abstract source

The most complicated and most important relationship I have is the one I have with myself. After all, I’m the constant in all of the relationships I have. My thoughts, feelings and actions dictate all of my relationships from beginning to end. How I view myself is the largest factor in all of my relationships. It not only dictates the type of people I attract and allow in my life, it is the driving force in how I treat them and how I allow myself to be treated and for how long. Having sickle cell, I have no choice other than to be a leader. Especially when it comes to dealing with my doctors and nurses in and out of the hospital. At a very young age my mother began to teach me to trust my instincts and stand by my decisions. That meant that I not only had to believe in myself but, I had to without question or hesitation tell people what I needed and speak up when they did something wrong. At 2 years old my mother taught me to place my hand over possible I.V. site and say “No!” to the nurse attempting to start the I.V. That was my first lesson in not only guiding my nurses but also in knowing me. Abstract source

Sickle cell disease is an inherited disorder in which red blood cells become C-shaped. This causes impaired blood flow, pain, and other health problems. Symptoms usually show up by about 5 months of age. Although a child who has sickle cell disease should be under a healthcare provider's care, parents can do many things at home to reduce symptoms and maintain the child's health. Take these steps to prevent infections: -Contagious diseases like the flu can be dangerous for children with sickle cell disease. They, as well as their caregivers and family members, should wash their hands several times a day with soap and water to reduce the spread of the flu virus and other germs. -Children with sickle cell disease are also vulnerable to illness from a bacterium called salmonella. To avoid salmonella, they should avoid eating raw or undercooked meats and eggs. -They should also avoid touching reptiles. They can carry the bacterium. -Make sure your child's immunizations are up to date. Abstract source

Pain is a long-lasting problem for people who have sickle cell disease. Bouts of severe pain can last for hours to days and are difficult to treat. Pain can be exhausting for caregivers as well as for the person in pain. A pain management plan can help a person cope with chronic pain and with pain caused by a sickle cell crisis. Your doctor or a pain treatment specialist can help you make a pain management plan. This plan includes instructions on how to treat mild pain at home. And it tells you when you need to go to the hospital if your pain gets worse. Your management plan: - Clarifies your and your doctor's preferences ahead of time. - Explains your needs to other health professionals who care for you. - Offers you some predictability and control during times of crisis. Abstract source

The FDA continues to work with stakeholders including patients, academics and companies developing treatments to improve therapeutic options for people living with SCD. A growing number of new products are in the pipeline, and researchers are exploring new treatment approaches. “These potential treatments are in different stages of development, including early and late clinical trials,” Farrell says. (Clinical trials are voluntary human research studies designed to answer specific questions about the safety and effectiveness of potential new treatments or to study new ways of using existing treatments.) Companies developing sickle cell products can ask the FDA to grant a “fast track” designation, a type of regulatory status that seeks to bring new products to market faster. “This allows for early and more frequent interactions with the FDA to discuss any issues that come up during development, such as manufacturing and trial design,” Farrell explains. If preliminary data show potential promise over existing therapies, companies also can request “breakthrough therapy designation” to speed the development and review of products. Abstract source

Jamal Munnerlyn is an innovative executive producer with extensive operations and strategic planning experience within highly competitive markets. He is a collaborative communicator continually focused on building relationships and promoting synergy across teams to drive positive change. He owns a solid industry acumen, strong team building skills and he is able to synthesize complex and diverse information quickly. He has produced more than 7,000 original content pieces, webisodes, and TV episodes for brand partners, broadcast and digital distribution networks. Jamal is a natural leader and a committed, hardworking professional with the ability to see both the end goal and the finer points of a process that ensure his team exceeds their goal. Online profile

Amy Mason is the Director of Annual Sickle Cell Cruise. She is also a facebook advocate. She works as a nanny for many people and is a sickle cell patient too. Amy never wanted to tell anyone about her disease as she was often bullied by others. Online profile

Retired at the age of 34 because of Sickle Cell Disease, Tina Kay found herself sharing her life with others. This sharing has allowed her to become a published author and a national advocate for Sickle Cell Disease presenting to the NIH, CDC, & FDA. She has her own radio show, is a State Officer for the NAACP, chaired the ADA Committee for the City of Birmingham, and mentors many young ladies living with this disease. IMMUCOR Chose Tina Kay as the Sickle Cell Patient Face and story to use for their 2017 campaign! Tina Kay also spoke at the annual American Association of Blood Banks conference in San Diego, CA as the focus for Immucor was Sickle Cell Disease and blood donation for patients like Tina Kay. Online profile