Running with a rare disorder

Steve lives with the rare disorder ANCA Positive Vasculitis, resulting in bouts of chronic fatigue and sometimes having to rely on a walking stick to get around.

For Steve, staying fit through running, walking, kayaking, sailing and some weights plays a huge role in his mental, emotional and physical health.

“Being fit means I can get enjoyment out of the good days. It seems if there is an activity I want to do, go sailing for example, it seems more likely that when the day comes, it is almost fatigue free."

"I've heard that brain pathways remap with positive influence. I'm not sure if this is what's going on, but the effect is there.”

Before Steve was diagnosed, he regularly ran in half marathon races.

“My times had been coming down and were just over 2 hour 2 minutes for the 21.1 km before I became ill. I run trained regularly and did a couple of short distance runs in the mornings before work and a longer run in the weekends.”

“ANCA has been a tough road. I have needed to have over a month between 10 km events, running short distances in training, and rely on walking distance of around 8 km maximum before doing an event. My running pace has improved but I have a slow walking pace.”

“I'm looking at doing some 5km races next year, with the goal of reaching out to 10 km, as training for 10 km is difficult right now,” says Steve.

Steve’s advice for others with a rare disorder interested in taking up some more physical activity in their daily life is to ease into it.

“Firstly, work out what type of activity you want to do, and pass it by your doctor or specialist. Next break down any goals you have, e.g. running 10 km and then make a training plan to achieve your goal.”

“Start slowly and build up - regular shorter distances are better than trying to run an endurance distance from nothing. If you are struggling, try contacting others via a club or an upcoming event website for help. The other thing is to not be beaten by the bad days. In my case, there are weeks that seem to exist in streams of these, other weeks are way better.”

For Steve, it’s about making the most of the good days.

“I want to enjoy life as much as possible. I can't do much about the bad days, but at least I can still get out and about.”

Steve most recently ran the Clevedon 5km and came first in his age group.