Gina Glass, Executive Director and Founder of Dreamsickle Kids Foundation, describes a crisis which inspired her to create the patient advocacy group.
Sickle cell disease is an inherited blood disorder. Symptoms usually begin 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. Over time, organ damage can occur without proper treatment, creating problems in the spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones, and/or skin.
Dreamsickle Kids Foundation is focused on increasing awareness about sickle cell disease and other rare diseases among patients, families, and health care professionals.
As Ms. Glass explains, the event that inspired her to create Dreamsickle Kids Foundation was a health crisis where her daughter, who has sickle cell disease, was dismissed at a local hospital. A few days later, after taking her to a different hospital, Ms. Glass’s daughter was admitted due to a severe case of pneumonia. Realizing that Nevada was lacking resources for sickle cell disease patients and noticing a lack of understanding in general about the disease, Ms. Glass began creating the patient advocacy group and working with her local government officials to increase awareness of the disease.
For more information about sickle cell disease and other rare blood disorders, visit https://checkrare.com/diseases/hematologic-disorders/