According to a story from Cape Town Etc, two girls in South Africa were living with the same rare disease: primary immunodeficiency (PI), a group of rare conditions in which the function of the immune system is compromised. The girls, named Angie and Caitlyn, met each other online and soon became close friends. They were able to relate and bond with one another over the rare disease that they shared. Recently, with support from the broader South African rare disease community, the two met in person for the first time in Cape Town.
About Primary Immunodeficiency
Primary immunodeficiency describes a group of disorders which are characterized by some degree of dysfunction of the immune system. These diseases are generally the result of genetic abnormalities and are not the result of other conditions or external factors. In some cases, they may remain latent until a certain environmental trigger causes problems to appear. The symptoms of these disorders may vary considerably in severity and depend on the specific subtype. However, some symptoms may include chronic, persistent infections, developmental delays due to infection, dysfunction of certain organs, and increased vulnerability to autoimmune disorders or blood cancers such as lymphoma. Treatment of most types of primary immunodeficiency is symptomatic and supportive; patients may be told to take steps to avoid exposure to pathogens; medications to enhance immune function and fight infections are also used. To learn more about primary immunodeficiency, click here.
Best Friends United
The two patients lived in different provinces of the country but were simply desperate to meet one another. Eventually the story of the girls’ friendship began to gain wider attention and Kulula, a low-cost airline in South Africa, flew Angie to Cape Town so that she could meet Caitlyn in person. This can be a daunting task for a primary immunodeficiency patient, as they are more vulnerable to common germs shared between people on transportation services.
However, the effort when off without a hitch. The story gained even more attention when Rare Diseases South Africa, a nonprofit organization committed to supporting rare disease patients in the country, shared the story on their Facebook page.
To learn more about the activities of Rare Diseases South Africa, click here.