Hey Cuties,

Your trustee St. Jude Cutie, is back giving you some knowledge. We are 17 days from Thanksgiving, I’m just saying. St. Jude is amazing and I’ve told you that a million times, but this one served my personal interest. Over the years I’ve heard about sickle cell disease, but I always heard people say it is a black person’s disease. The lie detector has determined that is a lie. You can be any race or ethnicity and get sickle cell the disease and or the trait. Did you read that for understanding?

I didn’t just Google this information because there is a lot of conflicting information regarding sickle cell. So, before we get started, let me show you my receipts so you know I’m real. I had the pleasure of chatting with Dr. Jane Hankins, M.D. She is an Associate Member of the Department of Hematology at St. Jude Children’s Research Hospital in Memphis, TN. Dr. Jane was so gracious in sharing the knowledge and answering my questions. She also shared her gripes which I like, you know we keep it real on MimiCuteLips and the truth isn’t always pretty but knowledge is power.

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H Clinic in St. Jude Children’s Research Hospital, Memphis, TN

Q: What is sickle cell? Sickle cell disease is an inherited blood disorder that results in red blood cells becoming hard and sickle-shaped. The shape disrupts the normal flow of blood in the body, which can cause painful and sometimes life-threatening side effects.

Q: What determines if you get sickle cell or not? Sickle cell disease is an inherited disorder; if both parents carry the trait for sickle cell, the child has a 50% {1 in 2} chance of carrying the trait. If both parents carry the trait for sickle cell, the child has a 25% {1 in 4} chance that any child of theirs will have sickle cell disease. There is also a 25% {1 in 4} chance that the child will NOT have the trait or the disease. If the child inherits the sickle cell gene from one parent they will not have symptoms of the disease, but they can pass the trait on to their children.

Q: What are the symptoms of sickle cell disease? People with sickle cell disease can have complications such as: infections, painful swelling of hands & feet (dactylitis), fatigue, stroke, organ damage and pain.

Heart health is often poor in sufferers of sickle cell disease, though this can be mitigated in several ways. Medications, supplements like those discussed in these unify health labs reviews, and a healthy diet can help keep the heart healthy. Though as a sufferer of sickle cell disease ages, the risk of cardiovascular problems can still increase.

Q. Why is it sickle cell so painful sometimes, and what happens to cause the pain? The sickle-shaped cells disrupt the normal flow of blood in the body, which can cause painful and sometimes life-threatening side effects. Abnormally shaped red blood cells cannot move through blood vessels easily and at times they are blocked from delivering oxygen to some body tissues. The pain can be managed with some things, such as over-the-counter pain relief medication or cannabis edibles (as cannabis has pain-relieving properties) but there is nothing than can be done to stop the cause of the pain. Others may want to consider products like spectrum cbd oil to combat the pain as well as other physical and mental health concerns, making life more bearable.

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Red Blood Cell: My job is to carry oxygen and give your body energy.

Q: Are there different types/levels of sickle cell? There are several types of sickle cell disease: HbSS: you inherited a sickle cell gene from each parent. HbSC: you inherited a sickle cell gene {S} from one parent and a gene for an abnormal hemoglobin {C} from the other. Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. People may also have two types of sickle cell disease known as HbS beta thalassemia: A more severe “O” type and a less severe “+” type. There are also a few rarer types of sickle cell disease.

Q: What happens in the blood that actually causes sickle cell? All red blood cells contain hemoglobin, which carries oxygen from the lungs to all parts of the body. People without sickle cell disease have red blood cells that contain mostly hemoglobin A. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, which causes the red blood cell to change from a round circle shape to a banana shape.

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St. Jude patient D’Avalon, age 17, sickle cell disease{Now 19} Photo Credit: St. Jude Children’s Research Hospital

I had the honor of meeting D’Avalon back in September during sickle cell awareness month.

WHO CAN GET SICKLE CELL?

Q: What is it about black people that makes us more susceptible to getting sickle cell? The first known case of sickle cell originated in the Caribbean island of Grenada. It was thought to be linked to anyone sub-Saharan African and those in that area where the sickle cell gene originated. Keep in mind this is an inherited disease/trait. Forced migration changed things. SCD is most common among people whose ancestors are from Africa, Mediterranean countries like Greece, Turkey and Italy, India as well as Spanish-speaking regions in South and Central America.

About 1 out of 13 African-Americans are born with the sickle cell trait. 1 out of 365 African-American children born in the U.S. has sickle cell disease.

EDUCATION:

Q: How do you determine how much sickle cell education you give? The process begins with parental education. St. Jude begins educating the children as early as the toddler age. They just need to be old enough to play with toys. Being visual is the best way to teach them at this young age. St. Jude is all about age appropriate education, for the adolescent age the staff asks parents to step out and they role play a visit to see how the kids explain their sickness.

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Plush Bone used to teach toddlers

The kids can unzip the bone and pull out the plush versions of the content on the note cards.

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Teaching Cards

In order to explain sickle cell, you need a blast cell, a red blood cell, platelet cell, a germ and bone marrow.

WHY ST. JUDE?

In 1983, a St. Jude patient was the first in the world to be cured of sickle cell disease through a stem cell transplant. The patient had leukemia and sickle cell disease. A St. Jude doctor performed a stem cell transplant to cure her leukemia using bone marrow donated from her brother. Ultimately, the patient was cured of both leukemia and sickle cell disease.
What research at St. Jude is being done to help sickle cell patients?

The St. Jude-Methodist Sickle Cell Disease Transition Clinic – was created to help 18-year olds make the leap from St. Jude to adult-care facilities of their choice. Clinicians hope the transition program will become a national model for similar programs that encourage teens with sickle cell disease to continue their treatment as adults.

A new study called SCCRIP (Sickle Cell Clinical Research and Intervention Program) looks at long-term outcomes in sickle cell disease. St. Jude will sequence the genomes of 1,000 children with sickle cell disease to understand why some patients experience more severe symptoms. They will be using things like these high-performing centrifuge tubes to see if they can find out anything new about the long-term outcomes in sickle cell disease.

St. Jude is currently developing a mentor-ship program to pair older patients with younger patients to help them cope with living with sickle cell disease.

St. Jude doctors are conducting research in the laboratory to develop cures and uncover insights into the long-term effects of sickle cell disease.

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This is another toy that St. Jude uses to educate the children on their medical complications.

HOW DO WE HELP?

  • Get the word out and communicate correct information.
  • Hydroxyurea is an effective drug used to treat sickle cell disease.
  • Anyone can have sickle cell; it is NOT exclusive to black people.
  • Get your sickle cell treated by people who know how to treat the disease. Don’t just go to anyone. You wouldn’t go to a foot doctor to treat your cancer.
  • Donate bone marrow, it is very easy to become a donor. Sign up, select to be a donor and they will send you a kit. You swab your mouth and mail it back. It is that simple to see if you can be a donor.
  • If you have the sickle cell trait you can still give marrow.
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Jane Hankins, M.D. , Associate Member, Department of Hematology, St. Jude Children’s Research Hospital

Jane Hankins, M.D., is an associate member in the Department of Hematology with many years of experience caring for children with sickle cell disease, and experience conducting translational and clinical trials. She is the primary investigator or co-investigator on several federally funded grants aimed at advancing the care of sickle cell patients, including testing new therapies and designing new systems of care.

Dr. Hankins has conducted phase I and translational studies, and is currently the primary investigator for two phase III clinical trials in sickle cell disease. Dr. Hankins’ created a transition program in Memphis that follows children with sickle cell from pediatric to adult care, in collaboration with the Psychology Department, University of Tennessee and Methodist University Hospital. This program, formerly funded by the US Deparment of Health and Human Services, has increased readiness for transition among adolescents with sickle cell disease, increased placement in adult care from 15 percent to 80 percent, and reduced hospitalizations among young adults by 50 percent.

Dr. Hankins joined St. Jude in 2005. The past 10 years have been dedicated to clinical research and care of patients with sickle cell disease. Her main goals have always been to provide individuals with sickle cell with an improved clinical experience and to lead investigations of new diagnostic methods and therapies for the hematological disorder.

Some of her notable achievements include the development and implementation of an MRI-based non-invasive technique (MRI R2*) in collaboration with the Radiological Sciences Department. This technique is incorporated into clinical care and provides improved control of tissue iron overload (proportion of sickle cell patients with liver tissue iron within desirable range increased from 34 percent to 42 percent). With prior NIH-funding, she is currently completing the calibration of a new MRI technique using ultra-short echo time sequence to further refine the quantification of tissue iron in patients with acquired iron overload.

Dr. Hankins also created a large longitudinal sickle cell disease cohort study (SCCRIP) in collaboration with the Epidemiology and Cancer Control Department at St. Jude. SCCRIP spans pediatric and adult years and creates and platform for genomic and complex outcomes research studies in sickle cell patients, helping to better understand disease progression and prognostic markers of disease severity. More than 560 children and adults with sickle cell disease are enrolled on the study, and the goal is to expand the study to include older adults and children from St. Jude affiliates and adult programs in Memphis.

RESOURCES:

St. Jude Children’s Research Hospital

Center for Disease Control and Prevention

Sickle Cell Disease Association of America

National Marrow Donor Program

Now that you have been schooled on the ins and outs of sickle cell it is your duty to share the knowledge and correct others when they are sharing inaccurate information. *pinky swear* If not, just drop this link on them and let them get their life.

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St Jude Ambassador

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