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 who struggle to find others locally with the same condition, or to provide anonymity for those who are likely to face stigma (e.g. HIV/AIDS-related infections).
Be extremely wary of Candida support groups as many 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.
|National Aspergillosis Centre Support (UK)
Aspergillosis carers, family & friends
The Aspergillosis Trust
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 during Aug)
#worldaspergillosisday (1st Feb, or visit the website)
Information for patients
|Aspergillosis patient and carer blog
Aspergillus & Aspergillosis Scientific and medical news written for a mixed audience
Aspergillus Jill UK patient with aspergillosis
Maribel’s Kidney Valley Fever survivor who previously had a kidney transplant
Stewart Vlogger on YouTube with aspergillosis
|Aspergillosis Patients & Carers (stream a monthly in-person meeting)
British Lung Foundation
Valley Fever Survivor
Living well with long-term 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 what to expect during procedures.