Do I look Ill? Think Fungus.
Eight years after opening we have seen thousands of patients with chronic forms of aspergillosis and support thousands around the world more with our outreach support communities on Facebook, Yahoo and NHS Choices.
These highly active communities are helping themselves by learning about aspergillosis and by maintaining the highly important social links between people who have these rare and isolating diseases. Social links are vital for helping keep spirits up by swapping information about a personal experience for patient and carers and disseminating best advice from more experienced members to those who have recently joined. One beneficial effect is to reduce stress and thus improve the ability to self-heal. Our medications are not the only way we try to help defeat these illnesses!
Our patients are not the only people who benefit from the interactions in our patient communities. Increasingly our researchers are required to involve patients directly in the planning of our research in addition to the more usual volunteers needed to provide tissue samples or to help us test new approaches to diagnosis, treatment, and management. We are building patients & carer research communities so that our researchers can get help whenever they need it, and patients can learn about our research work in ways that are more understandable to the layperson.
We have also involved our patients in celebrating Fungal Disease Awareness Week. When asked for what they felt was a problem when trying to live well with aspergillosis many come up with the same comment. That comment was:
When people see me they cannot see that I am unwell. When I tell them that I have aspergillosis they just assume that it is a minor illness as after all here I am standing in front of them looking fine! If people cannot appreciate how ill this disease makes me feel then I feel like I am exaggerating my illness. This can be family, friends, colleagues but even clinicians who have never heard of aspergillosis. I want people to think a little harder about what aspergillosis is and the damage it does to our health.
In answer to that call we have made a video that makes this point on their behalf. Patients can show it to whoever they want and hopefully it will help change minds about this incurable infection. Who knows? It may even prompt a few clinicians to ‘Think Fungus‘ a little more often.