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Save THe DAtes

June 3rd  Family Day Hadley Park Nashville ,TN 2pm-6pm ​
June 17th Juneteenth Block Party Downtown Commons Area Clarksville, TN 12pm-6pm
July-date TBD  "Meet Me At The (Trampoline) Park"- Kids Sickle Cell Day
September 16th - 3rd Annual Sickle Cell Warrior Walk/Run 5K Shelby Park Nashville, TN
Registration opens June 1st!
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If you are interested in volunteering at any of the events, register here.

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New link to pulmonary embolism with sickle cell trait
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From what is now the largest and most diverse genetic study of sickle cell trait ever done , researchers from 23andMe, the National Institutes of Health (NIH), and Johns Hopkins University School of Medicine ​found that having sickle cell trait — being a carrier for sickle cell anemia or having one copy of the HbS variant in the HBB gene — is associated with an increased risk for blood clots in the lungs, known as pulmonary emboli. 

What's In Your Genes?
​Order your 23andMe Health and Ancestry+ kit today.

Gene Therapy in Review

​Bluebird Bio submitted its Biologics License Application (BLA) to FDA for lovotibeglogene autotemcel (lovo-cel) for Patients with Sickle Cell Disease 12 years and older with a history of vaso-occlusive (pain) events. Learn more. 

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Vertex and CRISPR Therapeutics Complete Submission of Rolling Biologics License Applications (BLAs) to the US FDA for exa-cel for the Treatment of Sickle Cell Disease and Transfusion-Dependent Beta Thalassemia. Learn more 

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It's getting hot Outside, stay safe!

For most of us, the summer represents fun: playing outdoors, cooling off in a pool and enjoying a family vacation.
But for many with sickle cell disease, these activities can trigger an extremely painful “crisis” episode. 
There are steps you can take to help avoid a crisis, stay safe, and have an enjoyable summer: 

STAY HYDRATED-dehydration increases the risk of a sickle cell crisis. Don’t wait until you’re thirsty to drink.
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​STAY COOL-Wear Appropriate Clothing: Choose lightweight, loose-fitting clothing. Avoid sudden temperature changes, such as swimming in cold water

AVOID COLD POOLS-cold water causes the blood vessels to constrict and this can increase the risk of triggering a sickle cell pain crisis. Wear a wetsuit to help keep you warm while swimming and do not sit in wet swim clothes. Change into dry clothes immediately after swimming.

Schedule Outdoor Activities Carefully: Try to limit your outdoor activity to when it’s coolest, like morning and evening hours. Rest often in shady areas so that your body has a chance to recover.

Wear Sunscreen: Sunburn affects your body’s ability to cool down and can make you dehydrated. If you must go outdoors, protect yourself from the sun by wearing a wide-brimmed hat, sunglasses, and by putting on sunscreen of SPF 15 or higher 30 minutes prior to going out. Continue to reapply it according to the package directions.

Know the Signs: Learn the signs and symptoms of heat-related illnesses and how to treat them.​

Listen to Your Body: If you need to rest, take a break.
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​BTSSCYCLE Community Impact 

​From Chasity S. and Shelby:
​I met Dr. Scott back in January 2017 at a Christmas party that Dr. Debaun and the Vanderbilt team have yearly for the SCD youth . It was actually Jeannie (Vanderbilt Pediatric Sickle Cell Case Manager), that introduced me to her. It wasn’t until August 2018, that I asked if she would come speak with the educators at my daughters school about SCD. My daughter (Shelby) was 5yrs old attending a private school (EZELL Harding Christian School). At the time Shelby battled in/out hospitalization stays and needed frequent restroom breaks.
I requested for 504 plan to accommodate her needs at the school. Unfortunately, at that time her teacher wasn’t supportive of a 504 plan as she did not understand Shelby’s medical condition. As a parent my back was against the wall because I had no support in the school. 
I reached out to Dr. Scott/BTSSCYCLE by Facebook and asked if she would share her knowledge about SCD to the administrative staff at Shelby's school. I was initially hesitant, because I never thought I would be the one needing help educating teachers about SCD. I waited patiently as I wasn’t sure if she would provide that type of service of going into a private school. 
She responded right away and I was totally blown away with excitement! I immediately notified the principal at the school and she made it a priority for the teachers to attend the meeting about SCD. 
After the meeting staff were so humbled by the wealth of information provided to them. I would receive a call a few days later to setup an 504 plan for Shelby. I have  also received resources in the community financially and medically from Breaking The SSickle Cell Cycle Foundation.
I will say before working with Dr. Scott/Breaking The SSickle Cell Cycle Foundation., I felt hopeless and powerless within the private school sector. Having  Dr. Scott and Breaking The SSickle Cell Cycle Foundation support me, I feel confident knowing support is there.
Chasity S. 

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WHAT IS ​Sickle Cell Disease (SCD) ? 

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SICKLE CELL FACTS.

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What Causes
Sickle Cell Disease

GENETICS. 
SCD is a genetic condition that is present at birth. It is inherited when a child receives two sickle cell genes—one from each parent.

Symptoms and Treatment 


People with sickle cell disease can start to have signs of the disease during the first year of life, usually around 5 months of age. Pain is the hallmark sign of sickle cell disease.
​Symptoms and complications of SCD are different for each person and can range from mild to severe. 

Cure
Is There A Cure

Yes! A blood or marrow transplant  is the only known cure for SCD. Bone marrow is a soft, fatty tissue inside the center of the bones where blood cells are made. A bone marrow or stem cell transplant is a procedure that takes healthy cells that form blood from one person—the donor—and puts them into someone whose bone marrow is not working properly.

Sickle Cell Trait
Sickle cell trait is an inherited blood disorder that affects 1 million to 3 million Americans and 8 to 10 percent of African Americans. Sickle cell trait can also affect Hispanics, South Asians, Caucasians from southern Europe, and people from Middle Eastern countries. More than 100 million people worldwide have sickle cell trait.

Genetic Blood Disorder
Unlike sickle cell disease, a serious illness in which patients have two genes that cause the production of abnormal hemoglobin (the substance in red blood cells that helps carry oxygen), individuals with sickle cell trait carry only one defective gene, have normal functioning hemoglobin and typically live normal lives.

Newborn Testing
All newborns in the United States are now tested for sickle cell disease and sickle cell trait. Sickle cell disease can be identified before birth by testing a sample of amniotic fluid or tissue from the placenta. People who carry the sickle cell gene can seek genetic counseling before pregnancy to discuss options.

​DIAGNOSIS.

SCT is diagnosed with a simple blood test. People at risk of having SCT can talk with a doctor or health clinic about getting this test.

COMPLICATIONS.

Most people with SCT do not have any symptoms of SCD, although—in rare cases—people with SCT might experience complications of SCD, such as pain crises.