Gina Glass, Executive Director and Founder of Dreamsickle Kids Foundation, discusses the unique difficulties of caring for someone with sickle cell disease.
Sickle cell disease, as described by the NIH, is an inherited blood disorder. Early symptoms usually occur in childhood and include swelling, fatigue, and jaundice. As the disease progresses, there is an increased risk of infections, delayed growth, and periodic episodes of pain (sickle attacks). Over time, organ damage can occur, creating problems in the spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones, and/or skin.
Dreamsickle Kids Foundation is a patient advocacy group based in Nevada focused on increasing awareness about sickle cell disease and other rare diseases. In addition to educating families impacted by sickle cell, the group also educates health care professionals and the community about the effects of this disease.
As Ms. Glass describes, caregiving for someone with sickle cell has many challenges. Due to inconsistent levels of knowledge about the disease and how some symptoms of the disease can present, sickle cell crises may go unnoticed or be dismissed. Furthermore, being the primary caregiver of a child with sickle cell disease means one may miss a lot of work, which was the case for Ms. Glass. Fortunately, since building Dreamsickle Kids Foundation, she has been able to attend to her daughter’s health without losing work.
For more information about sickle cell disease and other rare blood disorders, visit https://checkrare.com/diseases/hematologic-disorders/