Over upcoming editions we will shine the spotlight on our Committee so that our members can get to know a little about the people behind the scenes. First up is our Chairman Mark Kunach.
What is your role on the Committee and what does it entail?
Chair. Somewhere between the captain of a ship and conductor of an orchestra. If you have good committee members then the Chair's role is easy.
Can you briefly share your experience with GBS or CIDP?
A bit daunting at first, as like many I have had a few different diagnoses, innumerable test and re-tests over many years before a diagnosis of MMN, Multi focal motor neuropathy. I found once you accept you have the disorder and work as best you can to educate yourself, especially as the doctors don’t have all the answers, then you can just get on with life. Staying in denial is the road to ruin not recovery.
What was the toughest challenge you faced during your recovery and how did you overcome it?
Contracting Ulcerative Colitis on top of the MMN. This effectively doubled the stress on my body and severely impacted my energy levels resulting in a chronic state of fatigue which I am still battling. I found I was able to develop strategies to manage my MMN fatigue and pain but the UC has called for a new approach which I will have to refine over time. Self education and knowing your body are important and providing feedback to your specialists as everyone presents differently.
Has your GBS/CIDP journey changed your life in any way?
Yes. Whilst I have always been a strongly focussed and intense at times type of individual acquiring MMN and now UC has given me a deeper understanding and appreciation of life. Both MMN and UC can be severely debilitating disorders at times and you have days that you think are the worst but when you wake up the next day you are stronger for the challenge.
What inspires you each day?
The anticipation of learning something new, especially if it is some insight into GBS/CIDP/MMN or UC. A cure for these complex conditions will likely not come from some all encompassing breakthrough but a number of cumulative steps like the recent advances in MS research.
Do you have anything else you would like to share?
Whether you are a sufferer of GBS/CIDP or related disorder, a family member, friend or medical professional, we are all travelers along the road to recovery. Some sufferers internalise their experience and that is fine. However, for those who need help along the way or just want to share their experience the GBS Association can provide that vehicle on the road to recovery. For a small membership fee you can get on and off as many times as you like make new friends and contribute to the collective pool of GBS/CIDP knowledge.