Doctor Deborah Green is the current Program Administrator and Director of Health Education at California's Sickle Cell Disease Foundation. I met with Dr. Green to discuss questions I had and mainly what role the foundation has had in providing help and education for SCD. The foundation first started in 1957 as a research foundation with four African American doctors. Since then, after raising money and getting funds, it has developed into the Sickle Cell Foundation of California. Dr. Green first explained the science and genetic background to Sickle Cell Disease and then clarified the impact it has on those with the disease and those who carry the trait.
Our Interview
1. How has Sickle Cell disease evolved?
When Sickle Cell Disease (SCD) first started being treated, there were no widespread treatments. The treatments offered were complicated and had many effects across the whole body. Care for Sickle Cell carriers was fragmented, and there were very few specialists to help. Today, there are centers all over the US which provide care, counseling, and support to sick cell anemia carriers or families with traits. There are multiple ways to treat Sickle Cell today, and there is current research focusing on developing less painful treatment forms.
2. What new technologies or treatments are used to understand the disease?
One of the forms of treatment is blood transfusion therapy which is used to provide normal blood cells to the patient’s body. This treatment helps with the disease and is used to lessen the blood’s viscosity. Blood transfusion, however, is not a cure because it is only a treatment aimed to increase tissue delivery of oxygen.
3. What concerns are there with having a family in the future and carrying the trait?
After birth, newborn screening is performed to determine if the child has SCD and or other diseases. This process is a part of standardized routines for newborn children and is carried out in most state hospitals. It is essential to know at an early age, as SCD will start causing high pains within a brief period of the baby’s first months. SCD can lead to organ failure over time and many other complications.
Parents must prepare themselves to raise a child with SCD because it is such an unforgiving disease. There is a grace period between the first 2-3 months during which the infant will not feel pain. Once this period ends and fetal hemoglobin stop being produced, the baby will start to feel pain and other symptoms of SCD.
Anyone with Sickle Cell trait must be educated about the risks before having children. Discussions need to be had with the other parent to understand the emotional and physical impact of introducing an infant with SCD into the world. Early death is a risk of this disease, and it is something that carries extra responsibility.
1. How has Sickle Cell disease evolved?
When Sickle Cell Disease (SCD) first started being treated, there were no widespread treatments. The treatments offered were complicated and had many effects across the whole body. Care for Sickle Cell carriers was fragmented, and there were very few specialists to help. Today, there are centers all over the US which provide care, counseling, and support to sick cell anemia carriers or families with traits. There are multiple ways to treat Sickle Cell today, and there is current research focusing on developing less painful treatment forms.
2. What new technologies or treatments are used to understand the disease?
One of the forms of treatment is blood transfusion therapy which is used to provide normal blood cells to the patient’s body. This treatment helps with the disease and is used to lessen the blood’s viscosity. Blood transfusion, however, is not a cure because it is only a treatment aimed to increase tissue delivery of oxygen.
3. What concerns are there with having a family in the future and carrying the trait?
After birth, newborn screening is performed to determine if the child has SCD and or other diseases. This process is a part of standardized routines for newborn children and is carried out in most state hospitals. It is essential to know at an early age, as SCD will start causing high pains within a brief period of the baby’s first months. SCD can lead to organ failure over time and many other complications.
Parents must prepare themselves to raise a child with SCD because it is such an unforgiving disease. There is a grace period between the first 2-3 months during which the infant will not feel pain. Once this period ends and fetal hemoglobin stop being produced, the baby will start to feel pain and other symptoms of SCD.
Anyone with Sickle Cell trait must be educated about the risks before having children. Discussions need to be had with the other parent to understand the emotional and physical impact of introducing an infant with SCD into the world. Early death is a risk of this disease, and it is something that carries extra responsibility.
Interviewing Doctor Susan Claster
On January 3, 2019, I met with Dr. Susan Claster, a Hematologist from Orange County, California. She is the current MD at the Sickle Cell Clinic at the MLK Jr. Outpatient Center.
The Clinic:
In 2013, Dr. Claster was recruited right before the Clinic opened. Her job was to find patients that needed education or care for their Sickle Cell Disease/Trait. Before the Clinic, most people would go to the ER, where they were sometimes falsely accused of being addicts for requesting the medications needed to deal with the pain.
The Clinic has helped people prevent these experiences by allowing them safe, professional care to visit routinely. Dr. Claster also shared a personal experience when she and her colleague visited a young man experiencing lots of pain. When they arrived, she explained that he had no mattress and was sleeping on the floor. These conditions made his pain and living situation even more unbearable. She continued to share that many others are living like this young man. The role of this Clinic is to develop relationships with its patients so doctors and nurses can treat patients with compassion.
What I learned:
After meeting with Dr. Claster, I learned the importance of being emotionally supportive towards patients. Upon meeting with the young man, the Sickle Cell clinic purchased a new mattress and other necessities to help the man live a better life. The vision of this Clinic and its members is clear, and it is evident that they are devoted to helping the Los Angeles community get the help it needs.