Sickle cell disease is a hereditary blood disorder affecting about 100,000 people in the United States.
The Community Advisory Board within Children's National Health System and George Washington University recently hosted the third Science Café 360 event titled, “Sickle Cell Disease: Painful and Prevalent in DC” which featured Allistair Abraham, MD, a Children’s National pediatric hematologist and oncologist, and 14-year-old bone marrow transplant recipient Kaitlyn Adams and her mother Tijuana Adams, discussing their experiences. More than 50 community members attended the event at Busboys and Poets to learn more information on what they can do to help advance care, research, and support individuals living with red blood cell disorders.
Science Café sessions usually feature an artist – visual or musical – to “help tell the stories behind the data,” said one facilitator, noting as music by legendary trumpeter Miles Davis, who had the disease, played in the background and a slideshow of paintings by a Haitian artist, also afflicted with sickle cell disease, played on a big projector screen.
Dr. Abraham, a sickle cell specialist, described performing bone marrow transplants - the only known cure for the disease – and how they have extended the life expectancy of a patient, making it possible to live longer than 40 years.
“It offers them a chance to live a relatively normal life,” he said. “You can change someone’s life completely. Not only save their life, but change their quality of life.”
Dr. Abraham said he hopes to see within his lifetime advances in care to stop sickle cell disease in the womb or “fix those cells and give them back and help the child move on.”
“I hope we get to the point where we can say it no longer exists. I fixed it,” he said.
He said the challenges those who treat, advocate for or live with sickle cell encounter:
- Lack of public awareness of the severe, often painful, disease
- Lack of highly visible advocates. One attendee mentioned that TLC singer Tionne “T-Boz” Watkins has sickle cell disease and has advocated for research and care, but she agreed that the disease needs more widespread attention, akin to other medical conditions
- Need for more funding and research
One of the highlights of the evening was a talk with former Children’s National patient Kaitlyn, who was born with sickle cell anemia, and received a bone marrow transplant from her mother the day before her mother’s birthday.
“We could never plan vacations because we never knew when Kaitlyn would get sick. We lived our life day by day, minute by minute, second by second,” Tijuana Adams said.
The teenager was poised and candid as she helped demystify what she and her family experienced, which was helpful for parents of younger children who asked about medication and treatment options, her pain, and other aspects of living with sickle cell disease.
“June was the best month of my life because I was finally getting rid of something that has been holding me back,” Kaitlyn said.
Kaitlyn said the transplant has changed her life in different ways including enabling her to go out with my friends and going to bed without a heating pad.
Children’s National’s Sickle Cell Disease Program
is among the largest pediatric sickle cell disease programs in the country. Each year, we treat more than 1,400 children and young adults with all types of the disease. It is the commonly identified disease on newborn screenings in the United States. About 80 newly diagnosed infants with sickle cell disease are seen annually in our Infant Sickle Cell Program
Patients with sickle cell disease need multiple blood transfusions throughout the year. January is Blood Donor Month
, a time to encourage more blood and platelet donations during the winter months when blood is in short supply due to travel, holidays, illness, and weather. Patients with sickle cell disease need multiple blood transfusions throughout the year. The Blood Donor Center’s Transfusion Buddy Program matches patients with compatible donors who have the same blood type, making it more likely that the patient's body accepts the transfusion. To join the program, visit the Blood Donor Center or host a blood drive with our Children's Bloodmobile.Helpful links