I was diagnosed with Gaucher Disease when I was 26. Like most newly diagnosed patients my initial emotions were fear and apprehension and I focused my mind on the infusions I was now to have every two weeks and my regular hospital check ups.
After a year or so following my diagnosis I received an invitation to attend a Gauchers Association member conference. Having had no contact with any other patients or their families up to that point I was intrigued to attend and meet other people affected by Gaucher disease.
The conference was the first time I truly began to understand how much time, energy and emotion had been put in to help those with Gaucher Disease like myself over many years and how fortunate I was that as a result of all those efforts I was able to be treated extremely quickly after diagnosis and return to a normal life. However it also showed me for the first time that there were still many challenges within the Gaucher community and many patients who weren’t as fortunate as me.
I started attending trustee meetings initially as an observer and then as an appointed director of the Association, a position I have now held for over 10 years.
As part of a small group of volunteer trustees we provide support to the Gauchers Association team, help agree and implement the key strategies for the Association and regularly review the budgetary needs and financial position of the Association. Like any board of directors our job is to protect the interests of the members of the Association, our “shareholders”, and always strive to ensure that the Association is meeting its members needs and has the resources to do so.
As a trustee I also have the opportunity to attend members events and meet other patients and their families. I hope that by listening to the issues they are facing and sharing my own experiences I can help provide them with some comfort but also think about how the Association can continue to meet their needs.
I have also been fortunate enough to be able to participate in a number of industry events and learn just a little bit about the science of Gaucher disease and the latest advances in the field. In addition I have been able to attend global patient meetings and meet people from all corners of the world who are also involved in trying to support Gaucher patients in their own countries.
Being a trustee of the Association is hugely fulfilling and fun. I have met some wonderful people over the years as a result of my role as a trustee and I hope that I have done something to help improve other people’s lives. Being a trustee means I can give something back in my own small way.