Monthly Support Groups for INDIVIDUALS WITH SCD AND THEIR FAMILIES.
Support groups will inform the Sickle Cell Disease(SCD) community about health care resources, health care education, and networking with health care teams.
We will cover educational topics on:
Sickle Cell Disease(SCD) - basics
Complications of Sickle Cell Disease
Alternative modalities including Guided Imagery
Updated Research/clinical trials
Improve self esteem
Help with finding medical information
Improve skills to cope with challenges
Stay motivated to manage a chronic condition
Health/Wellness Program includes
Art Therapy/ Holistic Support
Art therapy and holistic support are non-pharmaceutical pain
management tools. They incorporates all of our senses and utilizes the first ways in
which we communicate with each other. Both of these tools provides support on mental and physical
They build coping skills and improves quality of life.
Offering 6 small group sessions -one hour-for 6 weeks.
Promotes emotional health
Helps to fight addictions
6 sessions that includes
Mindful Yoga- 6 sessions
Excerise increses the level of antioxidants in the body and reducing inflamation in the body
Nutrition-Access to healthy foods
High protein diet
High energy foods
Key Facts on Sickle Cell Disease/Education
Sickle Cell Disease(SCD) is an inherited blood disorder affecting the hemoglobin portein in the red blood cells. Hemoglobin is what gives red blod cells their color a d allows to carry oxygen troughout the body. When hemoglobin cells become sickled, they form a ridged, and crescent shaped. Red blood cells lump together blocking blood flow and causes inflamation and lack of oxygen to every part of the body.
This process causes excruiating pain, organ damage, and a range of serious health issues.
SCD is diagnosed with a simple blood test. It usually is done at birth during routine newborn screening tests at the hospital. This process is called hemoglobin electrophoresis.
Types of Sickle Cell Disease
HbSS(Hemoglobin SS) - inherit two sickle cell genes(“S”), one from each parent. The most severe form of the disease.
HBbC(Hemoglobin SC) - inherit a sickle cell gene(“S) from one parent and a abnormal hemoglobin called “C” from the other parent. This is a milder form of SCD.
HbS beta thalassemia - inherit one sickle cell gene(“S”) from one parent and one gene for beta thalassemia, from another parent.
HbSD, HbSE, and HbSO - inherit one sickle cell gene(“S) and one gene from an abnormal type of hemoglobin (“D”, “E”, or “O”).
Sickle Cell Trait(SCT) - HbAS - inherit one sickle cell gene(“S:) from one parent and one normal gene (“A”) from the other parent. People with SCT usually do not have any of the signs of the disease and live a normal life, but this trait can be passed on to their children.
Sickle Cell Disease(SCD) in the United States
SCD affects approximately 100,000 Americans.
SCD occurs in1 out of 365 Black or African Americans births.
SCD occurs in 1 out of 2,230 Hispanic-American births.
SCD occurs in 1 out of every 41,647 Caucasian American births.
SCD also affects populations from Greece, Italy, Turkey, India, and Saudi Arabia. The exact number is unknown.
Approximately 3 million Americans carry a sickle hemoglobin trait.
Symptoms and Complications
SCD is a complex disease and the types and severity of symptoms can differ widely from person to person.
An excruitating painful crisis is one of the most common symptoms of SCD.
Complications that commonly occur in SCD patients an infection, hand-foot syndrome, eye disease, acute chest sym-drome(ACS), and stroke. Other serious complications can lead to organ damage of the lungs, liver, kidneys, and heart. This can result in early mortality.
Complications results in tremendous suffering, prolonged absences from school, and difficulty mainatining full employment.
There is no single best treatment for all people with SCD. Treatment options are different for each person depending on the symptoms. Treatments include receiving blood transfusions, receiving IV(intravenous) therapy (fluids given into a vein), medications to help with pain (opioids), stem cell transplant, and hydroxyurea.
The FDA recently approved three transformative new treatments(Endari, Oxbryta, and Adakveo) for sickle cell disease in 20 years. Hydroxyurea was first tested in 1984.