Understanding Sickle Cell Disease (SCD)

Get Help With Understanding Sickle Cell Disease (SCD)
The passion Charles Moorer has for this project, its advocacy, education, and funding is deeply personal to him. It was the tragedy of his own life that led him to this project, Faith enabled him to find the strength to continue and inspire others. The need to advocate for the affected families of Sickle Cell Disease is recorded throughout his written works: Giving up is not an option published in 2016 and Standing on the word of Adonai published in 2020. Please join us in our partnership with Kisha Hampton, statewide Sickle Cell Program Team lead and VP of Journey's By Grace Global Mission Sickle Cell by joining us as we collaborate to raise more awareness about Sickle cell, advocate for patients and increase and establish funding for projects in the US and Africa.

Indiana's Center for Excellence for Bleeding & Clotting Disorders
Kisha Hampton has been practicing public health specifically focused on sickle cell diseases for over 28 years. She received her Master’s in Public Health with an emphasis in BHS from Indiana University School of Medicine. Kisha is currently the Sickle Cell Team Lead at the Indiana Hemophilia & Thrombosis Center (IHTC). At the IHTC, she provides education and coordination to individuals with sickle cell disease, trains and onboards new staff, and plans various meetings, education sessions, and outreach clinics throughout the state. Kisha has presented on topics related to sickle cell disease at more than 30 conferences worldwide. She has developed and implemented a number of health education and promotion materials and programs.
Kisha holds both the offices of Vice President and Director of Education for Journeys By Grace Global Missions, Inc. As the VP and Director of Education for Journeys By Grace Global Missions, Inc., an organization addressing the unmet needs of those living with sickle cell in Kenya, Nigeria, and Ghana, Kisha has educated parents, patients, and families abroad. A member of several nonprofit and national organizations, she is active in the community. Her interests include program development, international health, and advocacy. In addition to being a mother and grandmother of four boys, she is also a proud member of the Zeta Phi Beta Sorority, Inc.
What is Sickle Cell Trait (SCT)
-Is NOT Sickle Cell Disease
Occurs when a person inherits one normal gene and one sickle gene
-Does not cause any symptoms of SCD, although—in rare cases—people with SCT might experience complications of SCD, such as pain crises
-If you have SCT, in rare cases, the following conditions could be harmful:
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Increased pressure in the atmosphere (which can be experienced, for example, while scuba
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diving).
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Low oxygen levels in the air (which can be experienced, for example, when mountain climbing, exercising extremely hard in military boot camp, or training for an athletic competition).
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Dehydration (for example, when one has too little water in the body).
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High altitudes (which can be experienced, for example, when flying, mountain climbing, or visiting a city at a high altitude).

-More research is needed to find out why some people with SCT have complications and others do not
- Is just one type of hemoglobin trait. There are over 1,000 a person can inherit

Treatments include…

Penicillin, Hydroxyurea, Endari, Oxbryta, Adakveo
Blood Transfusions (simple or exchange) are occasionally needed
Curative Therapies
Bone Marrow/Stem Cell Transplant
Gene Therapy-clinical trails only
Health Disparities
How Can the community help those living with Sickle Cell Disease?
-Donate Blood
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Access to Care
-Shortage of providers specializing in SCD care, especially adults
-Lack of comprehensive treatment centers
-High rates of ED utilization because lack of medical homes
Funding/Research
Cystic fibrosis received 3.5x more funding from NIH and 440x from private organizations
-FDA approved 15 medications for CF and only 4 for SCD
Pain Management
-Less likely to be prescribed pain meds
-Inadequate training of doctors and nurses
-Lack of standardization/pain protocols in hospitals