Crohne’s disease – diagnosed at 18. Suffered for 22 years.
Severe fatigue intermittently. Flare ups don’t always correlate with severity of Crohne’s symptoms and they typically last years. During flare ups, quality of sleep is very poor.
Fanatical cyclist, amateur author and dramatics enthusiast.
Why do I decide to help with IDEA-FAST consortium?
IDEA-FAST consortium appealed to me because fatigue is so poorly understood and so debilitating to its sufferers. I’m excited to have a tiny involvement in such a ground-breaking study.
How did you find your role so far?
As a PSAB member I have been exceedingly lucky to have been invited to be part of pivotal meetings and my opinions have been welcomed and valued.
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 853981. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and PARKINSON’S DISEASE SOCIETY OF THE UNITED KINGDOM LBG.