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  ​U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.), along with U.S. Representatives     Barbara Lee (D-Calif.) and Danny Davis (D-Ill.) introduced the Sickle Cell Disease Treatment Centers Act, legislation to improve access to care for Americans living with Sickle Cell Disease (SCD).  Approximately 100,000 Americans are currently living with SCD, an inherited blood disorder that causes pain, infection, and stroke. The disease disproportionately affects Black Americans but is also found among people from different racial and ethnic backgrounds. But despite the prevalence of the disease and the need for consistent and coordinated treatment, few patients have access to multidisciplinary care teams.  Tell your Elected Officials to Cosponsor the Sickle Cell Disease Treatment Centers Act of 2022.  Click here to locate your member of Congress.

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​​Cold temperatures and sickle cell pain​

​ Exposure to cold temperatures can trigger a crisis. People with SCD often report acute pain within hours after exposure to cold temperatures.
​Large studies have shown a link between cold temperatures and sickle cell-related pain. We do not yet understand how all of the factors contribute to this, but some of the possible reasons include:

• Colder temperatures cause blood vessels in the hands, feet, nose, and ears to narrow.  This effect is larger when it is windier or when your skin is wet.
• People usually drink less water when it is colder outside
• Viral infections like the flu are more common in the winter
• The holiday season often comes with higher stress, excitement, and more activities than normal

These factors can increase the chances of red blood cells becoming sickled and sticking to blood vessel walls. This can block blood flow and oxygen delivery, causing an acute pain episode. 
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Tips To Avoid A Vaso-Occlusive (VOC) Pain Episode in The Cold 

• Dress Warm/ in layers 
• Stay Dry 
• Stay hydrated. Try not to drink too much caffeinated drinks because they can lead to dehydration.
• Participate in winter activities in short intervals 20-30 min intervals. Rest and hydrate.
• Get plenty of sleep and rest to help minimize stress 
• Take steps to minimize infections; get appropriate vaccinations
• Have adequate supplies of pain medications 

BTSSCYCLE Community Impact 

From Tianna & Larry Johnson:

"Growing up I was always told to make sure my partner didn't have the sickle cell trait before trying to conceive because I carried the (sickle cell) trait. It was always in the back of my mind but never did I think I would have a child with sickle cell disease. August 2018 I gave birth to a beautiful little girl named Nayomi. 1 month later we found out she had this painful blood disease. I was devastated & fell into depression not knowing much about it or what to do to keep my baby healthy.
That same month I was introduced to Dr. Scott. She reassured me that with God anything is possible & my baby was going to be ok. She told me her experiences with her son who also has sickle cell. When Nayomi had her first episode at 9 months & another at 12 months I reached out to Dr. Scott with so many questions & she responded easing my mind once again. From medications to vacations do's & dont's to starting school she's always answered my questions & for that I'm very thankful. 
​
Tianna Johnson, sickle cell trait carrier and caregiver   ​

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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.