About 1 in 10,000 people are affected by hereditary angioedema (HAE)–and most don’t have a clue that the condition even exists.
HAE can be fatal, if not treated. Almost every family affected by the disease has family stories about a grandparent, uncle or aunt who died mysteriously… often whilst trying to get help at a hospital. People with hereditary angioedema suffer from swelling in the face, hands, feet, as well as airway. Throat swelling is one of the most dangerous symptoms since it can close the airway. Some other symptoms people experience are horrible abdominal pain, vomiting, and nausea.
Pippa Adams, a university student who currently studies health psychology and clinical skills, wants to learn more about the emotional effects of living with HAE for a unique reason. Her twin sister is affected by this rare disorder. This influenced her decision to further research HAE.
When Pippa’s sister was diagnosed, there was a small amount of information about day-to-day life with HAE. She states that her sister has been able to keep her HAE under control since she is not experiencing it as bad as others. Additionally, Pippa believes that there is not much awareness on this issue since it is rare. The general population does not understand or believe a person with HAE. Furthermore, this can have a psychological impact on patients.
HAE UK has given Pippa a grant to aid her in her research efforts. With this grant, she will get to meet with patients and HAE experts to learn more about other people living with this condition.