by Joseph Lasky, MD
Although most days William is a normal 13 year old boy, at least once a week he experiences severe pain in his arms, legs, or back (or all three) requiring him to take strong pain medicine for relief. Furthermore, at least 5-6 times per year he ends up staying several nights in the hospital to receive even more aggressive therapy for these “pain crises”, the hallmark of sickle cell disease. Sickle cell disease is one of the world’s most common inherited blood disorders, affecting millions of persons worldwide. Sickle cell disease is an inherited disorder where red blood cells are in a sickle—or ‘c’—shape, which can block blood flow and cause severe pain for patients.
In the United States alone, over 100,000 persons are estimated to be living with the disease. People with sickle cell disease live at least 20 years less on average than persons without sickle cell disease. In addition, living with sickle cell disease makes going to school, holding a job, and even having a family very difficult. New therapies and new methods of cure are desperately needed for people suffering from this disease. Luckily, there is hope. Research from Harbor-UCLA/LA Biomed and many other institutions are making headway in developing more effective therapies for this disease. See https://ash.confex.com/ash/2014/webprogram/Paper70720.html, which is based on initial studies done at Harbor-UCLA/LA Biomed.
Increased awareness of sickle cell disease and its severe complications is necessary to continue funding and support for research. June 19 was World Sickle Cell Day. The day was created in 2006 by the United Nations to raise global awareness for sickle cell disease as a public health problem. See the links below for more information about supporting research, education, and awareness of this common and devastating disease.
#SickleCellDay