Here are some resources to share with your patients, to help address those needs that are not directly related to diagnosis or treatment.
Online support groups
Peer support is very important for serious and chronic diseases, as they provide practical advice and a sense of not being so alone. Online support groups can be invaluable for patients with rare diseases or who are likely to face stigma (e.g. HIV/AIDS-related infections).
Be extremely wary of Candida support groups as the majority are for self-diagnosed sufferers of ‘Candida overgrowth’ rather than medically-diagnosed infections. They tend to promote restrictive diets and unproven or even dangerous supplements.
|Aspergillosis (public group)|
Aspergillosis (private group)
Valley Fever (Coccidioides) Survivor Support Group
The Histoplasmosis Support Group
Presumed Ocular Histoplasmosis Support (POHS)
|@aspertrust Aspergillosis awareness and advocacy|
#valleyfever Patient support network
#fungalweek Fungal awareness week (held August)
#worldaspergillosisday (held Feb, during AAA)
|Blogs||Aspergillus & Aspergillosis Scientific and medical news written for a mixed audience|
Aspergillosis patient and carer blog
Aspergillus Jill UK patient with aspergillosis
Stewart Vlogger on YouTube with aspergillosis
Maribel’s Kidney Valley Fever survivor who previously had a kidney transplant
|Websites||Aspergillosis Patients & Carers (stream a monthly in-person meeting)|
British Lung Foundation
Valley Fever Survivor
Patient experience videos
Living with fungal conditions
There is a wealth of information on coping with chronic fungal disease on the Aspergillus Patients & Carers website. Also see YouTube for many videos on useful topics such as how to exercise while seated or bed-bound.