SCD is much more than pain.
Sickle cell disease (SCD) is a serious genetic disease. The condition is present throughout a person’s entire life and gets progressively worse over time. While most people associate SCD with frequent episodes of excruciating pain, people living with this disease also face an increased risk of stroke, severe infections, progressive organ damage and sadly, even death at a young age.
In SCD, pain onset can be sudden and unpredictable, often requiring hospitalization. It can be triggered by stress, illness, dehydration, temperature changes, wind speed, altitude, and barometric pressure, but often there is no detected factor. The symptoms of SCD often begin in childhood, with many children suffering from significant events, such as stroke and acute chest syndrome, in addition to pain crises. As many as 70% of children with SCD who experience a first stroke will experience stroke recurrence, necessitating chronic monthly red blood cell transfusions to prevent future occurrences. Even children who are pain free between crises can experience disease progression.
The cumulative effect of progressive organ damage becomes apparent in adulthood, and approximately 50% to 60% of adults (median age of approximately 30) with SCD have end-organ disease due to chronic complications, with 24% experiencing damage in multiple organs.
Over time, SCD can lead to infections, delayed growth and unpredictable episodes of vaso-occlusive events (VOEs) such as acute pain, priapism, acute chest syndrome (a condition characterized by chest pain, cough, fever, low oxygen level and breathing problems), stroke and organ failure that can lead to sudden death. Tragically, one in four people living with sickle cell disease experience a stroke by age 45.
