Rowena Johnson

Rowena Johnson

Volunteer

Posted On: 22/10/2026 Recently Posted!

Rowena was diagnosed with Pompe in December 2003 after experiencing severe fatigue and increasing difficulty climbing stairs. She started enzyme replacement therapy (ERT) in 2007 but experienced treatment complications and has not received infusions since February 2015.

Rowena retired from work in 2015 due to fatigue and reduced mobility and moved to a retirement flat in Worcestershire in 2018. She remains as independent as possible, driving and using a rollator, crutches or power chair when needed.

Rowena enjoys socialising and stays connected with the NMC through summer visits and online meetings during the winter. She has recently adjusted her diet to increase protein intake and manages several food and medication intolerances.