Living with hyper-IgE syndrome and aspergillosis: patient video

The following content is reproduced from ERS

 

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. 

Rare disease spotlight: interview with an aspergillosis patient and consultant

In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious Diseases and Mycology, were both invited to speak at the event. Watch the full talk below to learn more about both the patient’s experience of diagnosis and the challenges faced by doctors when diagnosing patients with infectious diseases.

https://www.facebook.com/BLIDSoc/videos/613592952798238/

Interviews with Patients and Carers

Stories from other patients form an important part of patient support. Many people report that listening to or reading about someone else who has the same infection, and thinking about their experiences, helps them feel less alone as they come to terms with their own illness. 

Carers are not forgotten, they are a very important group who also require support – in fact if we only supported patients we would be neglecting half of the people we need to help. Two of the videos below are given by carers.

If you would like to find more patient and carer stories, have a look at our written stories page.

Patient stories from World Aspergillosis Day

On World Aspergillosis Day (February 1st), the Aspergillosis Trust organised a whole host of activities and awareness campaigns, to mark the occasion. Alongside their very successful Selfie Campaign, and the poster that was displayed on London buses in the run up to the day, the Aspergillosis Trust collected some poignant stories from patients and carers. Click here to read these stories and find out more about what the Aspergillosis Trust does.

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