Living with hyper-IgE syndrome and aspergillosis: patient video

In the above video, Sandra Hicks summarises her experience with hyper-IgE syndrome (HIES), a primary immunodeficiency syndrome, and how living with this rare genetic condition and associated lung infections impacts her life. As a direct consequence of HIES and its effect on the immune cascade, Sandra concurrently manages chronic Aspergillus infection (aspergillosis), nontuberculous mycobacterial infection (Mycobacterium avium-intracellulare), bronchiectasis colonised with Pseudomonas and asthma. She discusses the effect this rare disease and infection burden have on her daily life, including the influence of other factors such as temperature, humidity and antimicrobial resistance.

Sandra conveys her hopes for clinicians treating others with similar disease profiles, including the impact of immunoglobulin treatment; early, accurate diagnosis of primary immunodeficiencies and fungal infections; and awareness of potential interactions between antifungals and other medication (https://antifungalinteractions.org). She also discusses the importance of comprehensive, timely communication within and between multidisciplinary teams. Finally, Sandra emphasises the value of support from allied healthcare professionals for people with chronic lung conditions.

Sandra has since returned to pulmonary rehabilitation classes. These provide great benefit, not just for people with COPD but also for those living with other lung conditions. Making this service widely accessible would improve management of chronic lung conditions and could even reduce associated healthcare costs.

Sandra Hicks is a co-founder of the Aspergillosis Trust, a patient-led group that aims to raise awareness of aspergillosis. Click here to visit the group’s website and find out more about their work.