Good nutrition is a factor in your recovery from bone marrow transplantation. When you are unable to eat a balanced diet, supplements can be helpful. Good nutrition is a very important part of your recovery. It helps your body resist infection and repair tissue damage caused by chemotherapy and/or radiation therapy. Losing interest in food after a long illness is to be expected. Some of the side effects you might have experienced while in the hospital may continue even after you go home. These side effects may include nausea, vomiting, loss of appetite, taste changes, and a sore or dry mouth. With these symptoms, it may be difficult for you to imagine eating high-calorie, nutrient-rich meals. A well balanced diet with nutrients such as multivitamins, calcium, phosphorus, sodium and other supplements is essential.     Abstract source

Each day in the United States, about 80 people receive an organ transplant.  There are currently over 116,000 people on the national transplant waiting list.  Organ transplantation is often a life-saving surgery.  If you or someone you love has had a transplant surgery, it definitely makes you think about your own mortality and the importance of life insurance. Mortality Risk of Organ and Tissue TransplantationThere are several different types of transplant surgeries with very different implications.  Mortality risk varies not only by the type of organ or tissue transplanted, but also the reason why the transplant is needed.  For example, someone who required a kidney transplant due to trauma will have a better life expectancy over someone who required the transplant due to chronic kidney disease. Buying Life Insurance with a Transplantation HistoryThe best advice we can give in regards to applying for life insurance with a transplant history is to work with an independent life insurance agency.  Independent agencies have contracts with multiple life insurance companies.   Abstract source

Sometimes people with sickle cell trait (SCT) experience blood in their urine, a condition called hematuria. This can be a sign of a serious medical condition, so it requires a thorough medical evaluation.   Who can develop blood in their urine? Anyone can have blood in their urine. It can occur in children and adults.   How can I tell if there could be blood in my urine? What are the warning signs? Blood in the urine might be obvious because it turns the urine pink, bright red, or brown. Sometimes the amount of blood in the urine is so small that it does not change the color, but the red blood cells are visible under a microscope (called microscopic hematuria). Most people with microscopic hematuria do not have symptoms, but others will have some discomfort or a burning sensation when they urinate, and they tend to urinate more often than usual.   If I have SCT and develop hematuria, is my SCT the cause of the blood in my urine? Sometimes people with SCT have blood in their urine, which may or may not be related to SCT. If you have blood in your urine, tell your healthcare provider right away.   Abstract source

What is sickle cell screening? Screening for sickle cell means testing a person’s blood for abnormal types of hemoglobin: • Hemoglobin is a substance inside the red blood cell that delivers oxygen to all organs in the body. • There are many types of altered hemoglobin¸ but people with SCD or SCT make a form of hemoglobin which is abnormal and it is called hemoglobin S or sickle hemoglobin. • A blood test for hemoglobin S or sickle hemoglobin can tell you if your hemoglobin is normal, you have SCD or SCT (carrier status) or if you have another type of abnormal hemoglobin.   Why should I (or my child) get screened for sickle cell? • Getting screened to know your sickle cell status is extremely important at child-bearing age because SCD and SCT can be passed down to children through their parents’ genes. • Knowing if you have sickle cell trait is important because you could have a baby with SCD if your partner also has SCD, SCT or another abnormal hemoglobin gene (like hemoglobin C or Beta-thalassemia).   Abstract source

  Sickle cell trait (SCT) is not a mild form of sickle cell disease. Having SCT simply means that a person carries a single gene for sickle cell disease (SCD) and can pass this gene along to their children. People with SCT usually do not have any of the symptoms of SCD and live a normal life.  Hemoglobin is found in red blood cells and it gives blood its color. It carries oxygen to all parts of the body. Hemoglobin is made from two similar proteins, one called alpha-globin and one called beta-globin, that “stick together.” Both proteins must be present and function normally for the hemoglobin to carry out its job in the body. People with SCT have red blood cells that have normal hemoglobin and abnormal hemoglobin.  Genes are the instructions that control how red blood cells make alpha- and beta-globin proteins. All people have two genes for making beta-globin. They get one beta-globin gene from each parent. SCT occurs when a person inherits a gene for sickle betaglobin from one parent and a gene for normal betaglobin from the other parent. This means the person won’t have sickle cell disease, but will be a trait “carrier” and can pass it on to their children.     Abstract source

College students with sickle cell disease (SCD) can have a fun and safe college experience by taking a few safety precautions to keep themselves healthy. SCD is an inherited blood disorder that can cause severe pain. So for students with SCD, the transition of leaving home to go to college can be a fun and exciting experience, but also challenging. By making smart health decisions, students with SCD can live full lives and enjoy their college experience. Read below to learn 9 tips on how students with SCD can stay safe and healthy while at school.   What health challenges can college students with SCD face?  Pain episodes (mild to severe pain caused by SCD) are the most common health problem and the #1 cause for emergency department visits among adults with SCD. Students with SCD may also feel tired frequently, may need to take frequent breaks during exercise, and may not be able to participate in strenuous, high-impact physical activities. Students with SCD can better manage their pain episodes and other SCD-related problems by making smart health decisions.   9 Tips to Stay Healthy in College • Find Good Medical Care • Maintain and Update Medical Records • Practice Healthy Habits • Stay Active • Prevent Infections • Manage Stress • Create an On-Campus Support Network • Connect with an Academic Advisor • Join Support Groups   Abstract source

The Sickle Cell Data Collection (SCDC) program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD. Early screening, diagnosis, and treatment have allowed people with SCD to live much longer, making now a more important time than ever to study SCD health across the life course.    How can the SCDC program improve the lives of people with SCD? The SCDC program strives to improve health outcomes for people with SCD. By documenting health information of patients with SCD in the United States over time, the program can identify critical gaps in diagnosis, treatment, and healthcare access for people with SCD. For example, while early screening, diagnosis, and treatment have increased the lifespan for people with SCD, there are fewer than five hematologists seeing adult patients with SCD in California, limiting access to proper care and treatment for many adults. The SCDC program will use this type of key information to educate stakeholders about the gaps in care for people with SCD.     Abstract source

This group was created for members and families to post prayer requests each day.  Social media

Hospital Chatter is an online facebook group for people in the sickle cell community, who are in the hospital, as a patient or a loved one, and want to talk. We are not doctors, so we are not here to offer medical advice, just conversation with people who can relate to what you are going through. If you can't sleep or you need to talk in the middle of the night, we're hoping you can find someone on this group (consisting of people from all over the world) in every time zone.You are NOT ALONE! #SickleCellCommunity is at your service.  Social media

This is a place for moms with children with sickle cell or mothers with sickle cell who are actively trying to conceive. This is a judgement free zone where we can talk and share about the victories and achievements and sometimes pitfalls of our type of motherhood! This is a group for women only - mothers who have Sickle Cell, mothers of children who have Sickle Cell, women with Sickle Cell who are actively trying to conceive. Grandparents and/or legal guardians of children with Sickle Cell are also welcome. (If you do not fit into any of these categories but still feel like this group can help you please contact the admin/creator of the group - Shamir Jubert-Kimbro. Social media