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Sickle Cell Anemia is a disease that affects numerous of African Americans and many more worldwide. Many people were unaware of the illness, so there was not many foundations and advocates for the disease. It was not until T-Boz from TLC shared her diagnose with sickle cell anemia, that made people intrigue and start to investigate into what this disease really is. In our blog "Sickle Cell Warriors", we wish to bring more insight and awareness to sickle cell anemia and how to combat it. When you turn on the television, you always can find a commercial for people with cancer, diabetes and other illnesses. Very rarely do you see ads about sickle cell or treatment centers for it. In out blog, we will have information about sickle cell anemia, so people can read and understand the disease. New posts and material will be updated weekly to keep you inform of new news about sickle cell disease. We will have videos of people spreading awareness and also personal stories from persons who are affected by sickle cell anemia. With our slogan "fighting and providing for sickle cell awareness one red blood cell at a time", we can help shed light for people affected by sickle cell disease.

What exactly does this mean?

Medical Terminology

 Source

• Anemia: A reduced number of red blood cells. Anemia occurs in persons with sickle cell disease because the sickled red cells do not live as long as normal red blood cells. The individual cannot make red blood cells fast enough to equal the loss of the sickled red blood cells.
• Carrier: An individual who possesses and can transmit the gene for a given disease but does not exhibit the disease.
• Congenital: Conditions present at birth.
• Genetic Counseling: A communication process between health care provider and client that emphasizes providing accurate and up-to-date information about a genetic disorder in a sensitive and supportive, non-directive manner.
• Hemoglobin: A protein in the red blood cell that carries oxygen from the lungs to other parts of the body and gives blood its red color.
• Hemoglobin C Trait (AC): The inheritance of one gene for normal hemoglobin (A), and one gene for hemoglobin (C). A person who has hemoglobin C Trait (AC) is a carrier of the hemoglobin C gene, and is not affected by the gene.
• Hemoglobinopathy ( he-ma-glo-been-nop-a-the ): A term used to describe disorders caused by the presence of abnormal hemoglobin reproduction in the blood.
• Heredity: The transmission of physical and emotional traits and characteristics from parents to offspring.
• Inherit: To receive certain defined characteristics from a parent by transmission of the genes
• Pain Event or Painful Episode (also known as sickle crisis) - Pain due to blockage of the blood vessels by sickled blood cells. Pain is most often felt in the arms, legs, back, and abdomen. The pain may last only a few hours or as long as a week or two. The pain may be mild or so severe that pain medicine is needed. The number of pain events a person has may vary greatly.
• Red Blood Cells ( RBCs ): The blood cells that carry oxygen.
• Sickle Cell Anemia (SS): The most common form of sickle cell disease. Sickle cell anemia is the result of the inheritance of the gene for sickle hemoglobin (S) from both parents.
• Sickle Cell Disease: An inherited disorder of the red blood cells in which anemia is present and sickle hemoglobin is produced. There are three common types of sickle cell disease in the United States: Hemoglobin SS or sickle cell anemia, Hemoglobin SC disease, and Hemoglobin Sickle beta-thalassemia.
• Sickle Cell Trait (AS): The inheritance of one gene for normal hemoglobin (A) and one gene for sickle hemoglobin (S) . A person who has sickle cell trait (AS) is a carrier of the sickle gene, does not have the disease, and is generally not affected by the sickle hemoglobin.
• Sickled Cells: In persons with sickle cell disease, hemoglobin S in red blood cells stick to one another and cause the red cells to become crescent or sickle shaped. Sickled cells cannot pass easily through tiny blood vessels.
• Thalassemia ( thal-as-seem-me-yah ): A group of inherited diseases of the blood that affect a person's ability to produce hemoglobin in their red blood cells.



Picture Source

Sickle Cell Research

Signs and Symptoms

• Shortness of breath
• Dizziness
• Headaches
• Coldness in the hands and feet
• Paler than normal skin or mucous membranes (the tissue that lines your nose, mouth, and other organs and body cavities)
• Jaundice (a yellowish color of the skin or whites of the eyes)
• Fever

Other Symptoms of Sickle Cell Anemia

• Hand-Foot Syndrome
• Splenic Crisis
• Infections
• Acute Chest Syndrome
• Pulmonary Hypertension
• Stroke
• Eye Problems
• Priapism
• Gallstones
• Ulcers on the Legs

Treatment

• Sickle cell anemia has no widely available cure. The goals of treating sickle cell anemia are to relieve pain; prevent infections, organ damage, and strokes and control complications 
• Blood and marrow stem transplants may offer a cure for a small number of people who have sickle cell anemia. 
• Infants who have been diagnosed with sickle cell anemia through newborn screening are treated with antibiotics to prevent infections and receive needed vaccinations

Statistics in the U.S

• In the United States with an estimated population of over 270 million, about 1,000 babies are born with sickle cell disease each year. Approximately 70,000 - 100,000 individuals in the United States have sickle cell disease and 3 million have sickle cell trait.
• Average life expectancy for those living with sickle cell is about mid to late 40's.
•  New study in the Journal of Clinical Sleep Medicine revealed that 44 percent of adults with sickle cell disease who report trouble sleeping actually have a clinical diagnosis of sleep disordered breathing, including sleep apnea.

 

Foundations

• Sickle Cell Disease Association of America, Inc.
  Baltimore, Maryland 21227 scdaa@sicklecelldisease.org
• Sickle Cell Foundation, Inc. *Tallahassee, FL 32303* info@sicklecellfoundation.org
• Adult Sickle Cell Clinic Mainline Clinic
  604 S. Pecan  Dermott, Arkansas 71538
• ALL locations have donation options!!!

 





Signs & Symptoms

Treatment

Statistics

More Statistics

Foundations

Foundation Pic

Exclusive T-Boz Interview on her Sickle Cell Journey

         This touching, personal interview with rapper T-Boz highlights all of the inside scoop on Sickle Cell Anemia that most people never get to hear about. Like most celebs, T-Boz talks about how most people assume since she's a celebrity she must get special treatment. She wants to let everyone know this is not the case. She explains how it affects her other family members, how it's hard for her, and how there isn't any special treatments for celebrities. The interview begins with highlighting what the disease is and how it affects the body. She also discusses in detail how the genes are passed down hereditary. Just because a parent has the disease, doesn't automatically mean that the children will have it as well. This is a misconstrued notion that T-Boz sets the record straight about.

         In addition to her having to do her duties as far as being in the spotlight, she talks about the excruciating pain that she endures daily. Most people do not know the type of pain that people with this disease go through, but T-Boz tells the Doctors what it's really like. She also has physical skin issues that show, like change of color, blotchy patches, etc. In this interview, T-Boz shows home remedies anyone can use to help ease the pain they endure.  Not only does she have to deal with the physical pain, there is a lot of emotional pain associated with the disease. T-Boz tells The Doctors that once she was diagnosed, the doctors she was seeing told her she wouldn't live past the age of 40 and that she would never children. She has fought against those odds because she is 43 and has a 14 year old daughter. This interview shows the courage of T-Boz and she is a truly admirable person. 

How Sickle Cell Works

       Ever wonder how Sickle Cell Anemia actually affects the body, and why it affects the red blood cells the way it does?? This informative video will show you an inside look of the human body and how Sickle Cell actually affects the blood flow and blocks nutrients that is needed to enter certain parts of your blood stream. Since the red blood cells in Sickle Cell Anemia are shaped differently than regular blood cells, it takes those blood cells a lot longer to move through certain blood vessels. There are even some places that the sickle cell blood cells can't even fit through at all, causing major problems to occur inside of the body. Now you too can be more informed with Sickle Cell Anemia, and can contribute to the conversation even more! Check out this video to learn more, now!! 

Five African American Celebrities with Sickle Cell Disease

1. Tionne Tenese Watkins also known as "T-Boz" is a singer in the girl group TLC. She was born April 26 1970, in Des Moines, Iowa. When she was child she was diagnosed with sickle cell disease and has been battling it up to now. Even though she had sickle cell disease, it did not stop her from winning 4 grammies with her group TLC and selling millions of records worldwide. She was told by doctors that she would not live pass thirty years old and she would never have children, she is now fourteen years passed that life expectancy and has a 14 year old daughter. She is now spreading awareness by being a Sickle Cell Disease advocate. (Wikipedia)

2. Albert Jones known buy his stage name "Prodigy" is a famous rapper in the group "Mob Deep". He was born in Hamstead, New York on November 2 1974. Prodigy was diagnosed with sickle cell when he was a child and since being a rapper he was able to express anger of his suffering in his rap songs. Also her has wrote an autobiography documenting his life of his struggles. Now he is a advocate for Sickle Cell Disease and has worked with the Sickle Cell Disease Association of America to spread awareness and also raise funds.(Wikipedia)

3. Larenz Tate is an American film actor. He was born September 8, 1975 in Chicago, Illinois. You may know him from his role as O-Dog in the drama film "Menace II Society". he also has was in movies like Dead Pesident, Love Jones, Biker Boyz, and many more. With his brothers Lahmard and Larron they created the Tate Brothers Foundation to bring awareness for persons with Sickle Cell Disease. Larenz focuses on educating people about sickle cell. He currently is married and has three sons.(Wikipedia)

4. Tiki Barber is a American football athlete that played for the New York Giants for ten seasons. He was born April 7 1975 in Blacksburg, Virginia. He played as the running back and retired as the all time rushing and reception player of the team. Barber was a correspondent for NBC's "The Today Show" and "Football Night in America/Sunday Night Football". He has she awareness for Sickle Cell by heading "Be Sickle Smart: Ask Tiki About Iron" which informed people who had Sickle Cell on how to take care of their health.(Wikipedia)

5. Ryan Terry Clarke is a pro American football player and that played for the Washington Redskins. He was born on October 12 1979 in Marrero, Louisiana. He played as a safety and has played in the Pro Bowl (NFL all-star games) in 2012. He does not have sickle cell disease but he does have the trait which prevented him from playing in cities with high altitudes. Throughout his career he has also played for the New York Giants and the Pittsburgh Steelers. During his season in 2007 he had to be hospitalized during a game against Denver. At the end of the season he lost his spleen and gallbladder be cause of his sickle cell trait. He just announce his retirement in February of this year. He runs an organization called the Ryan Clarks Cure League that raises money for sickle cell research, clinical care and to spread more awareness. (Wikipedia)

Testimonies Of Sickle Cell Warriors

These videos were recorded a few years back, so many of these persons are older now.

Tiffany was 26 years at the time of recording this video.The doctors told her parents she would not live pass her 18th birthday but she has proven them wrong. As a child she would get sick many times. She would takes penicillin daily to prevent herself from getting a infection and causing a crisis. She describes a crisis a being stabbed repetitively with a knife in the same spot, not stop. Her brother also grew up with sickle cell disease and it was really tough for him as well. After she had her daughter who has just the trait, Tiffany would get really sick and be in and out of the hospital. She started taking a new medicine and it has being working great with her body. She has not been in the hospital for months and it keeps her healthy. She describes life as being great with her child and currently in school getting a Master's Degree is Heath Care Administration. Having a good attitude is what made her who she is now. She ends with a amazing quote by saying she has sickle cell, sickle cell does not have her.

Mike was 18 years old at the time this video was recorded. He likes to skateboard and play the guitar and many other things. He says that he experiences pain many times and uses a number scale of 1-10 with ten being most the extreme. 1-3 he able to do what he wants but any over 4 is when he doesn't like to do much or can't and stays in bed. To help with the pain he try to think about other things listen to music anything besides just laying down. He says it is very important to take your medicine and see your doctor because, that can cause you to have more pain. To stay healthy, he stays away from drugs and alcohol, and he also exercises. He says to people who have sickle cell you should not let it stop you from doing what you want, you are no different from anyone else. He always looks towards the future and to experiencing something new every day.

Damali (33) and Amiel Reid (16) are two siblings living with sickle disease. They talk about how painful having sickle cell disease. Damali said that when she was younger it was easier to combat but now that she is older it is harder to "bounce back". Lynnie Reid, their mother, says that Damali has dived into the "human side of the disease" which means she wants everyone to now about it and feel special. Amiel is more interested in the science side of it, trying to find a cure for sickle cell disease. He helped to establish stem cell research and also worked in labs. Their mother was very appreciated of the doctors that helped her and her children. Damali think that people should not die from a disease like sickle cell today and she encourages people to meet persons with sickle cell disease and see how hard it is for them to live without a cure.

Alexandria was 17 at the time of recording this video in 2010. She talks about how when she was young it was difficult for her to go outside and play because after, she would come home feeling sick. Alexandria was endured nights of severe pain because of her sickle cell and that exhausted her a lot. She describes the pain like a hammer hitting you for a long time. At 12 years old she had a silent stroke and was really scared. This when she was officially diagnosed with sickle cell anemia. She did not let it slow her down though. She continued to do well in school, getting straight A's and trying to motivate herself.