“When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle cell? We need to look into this,’” says Mimi, a 37-year-old lawyer and mom of four. Mimi’s medical history is similar to that of many individuals with sickle cell disease (SCD): she has experienced severe pain since a young age, frequently sought care in the emergency department (ED), and has received numerous blood transfusions (when healthy blood is given to a patient through one of their blood vessels). But Mimi’s genetic (inherited) blood disorder comes as a surprise to many healthcare providers when they first meet her because of one detail: she’s not African American.   Related story

Several different types of resources are included.  These resources are designed to be beneficial for healthcare professionals (e.g. physicians, nurses, nurse practitioners, physician assistants) who are not sickle cell experts and practice in a variety of settings (e.g. hospitals, primary care clinics, and emergency departments).  • “SCD Conferences” include select presentations from a two day, yearly SCD conference held at Duke. • “Short presentations for online learning” were specifically developed for adaptation to hospital-based, online learning systems. Each presentation includes 10 slides of content, and two post test questions. Short videos are included in many of these slide sets. • “Videos” include links to professional videos that serve as additional learning opportunities. Some of the videos from the short presentations are also listed.   Abstract source

People with sickle cell disease generally adapt well to air travel, but it can create difficulties for some. For this reason, it is important to plan ahead and know about potential problems so you can take preventative measures or deal with them should they occur. Choose a travel agent that is registered with ABTA or ATOL. You will need to inform the airline, travel agent and insurance company that you have sickle cell disease. If you fail to tell the insurance company this may invalidate your travel cover. Make sure you take out enough travel insurance. Always read the small print before you buy as you want to make sure you are fully covered for last minute cancellation due to illness or an air ambulance home if necessary. Abstract source

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   Abstract source

Check out this first issue of The Sickle Cell Warriors. Follow along with the heroes as they watch out for Terrance and help him advocate for himself at school. Related content

For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for marriage and children that led them to their IVF journey with PGD testing.   Related story

When you first meet my 5-year-old daughter Gia, you might notice how smart she is. She loves drawing, reading, and collecting toys. She enjoys watching Paw Patrol and My Little Pony and spending time with her big sister. But after spending some time with her you might also notice that she pays much more attention to drinking enough water and eating healthy foods than the average child. She is extremely aware of when her body needs to rest and has learned at a young age how to advocate for herself in hospitals and doctors’ offices. My daughter is a sickle cell warrior and one of the strongest people I know. Related story

On this episode, Dr. Z and Dr. C debut a series about the “Legends of Sickle Cell”. They interview Dr. Michael DeBaun and patient legend Shamonica Wiggins. Cheat Codes is a podcast for the sickle cell community that brings listeners a series of segments and interviews packed with critical education that patients and families need to know, as well as updates and clarifications from the social media "buzz" around sickle cell. Hosted by Ahmar U. Zaidi, MD (Dr. Z) & Michael U Callaghan, MD (Dr. Mike). Related story

https://www.youtube.com/watch?v=bSTAI7cwBbA

June 19 celebrates World Sickle Cell Day. Sickle cell patient Daisha Dillon shares her pregnancy success story and how her UConn Health care teams have been with her every step of the way in her journey to motherhood. “I trust UConn Health with me and also my baby. They take care of me like family." Daisha Dillon, 31, of Manchester is overjoyed to be six months pregnant and expecting her first baby to be born this September. But soon after her own birth she started her daily battle with sickle cell disease and the countless severe pain episodes that come with the inherited condition causing her red blood cells to be abnormally sickle-shaped. “The pain I experience from sickle cell is shocking and feels like someone is stabbing you, abruptly and repeatedly,” says Dillon. “One of the stigma’s for sickle cell patients like me is I was told my whole life I can’t have kids. It will just be too painful.” But together UConn Health and Dillon are striking out this misconception.     Related story