By Jess Breeze, Duchenne mum
Our first step into the community
My husband and I attended a Science on Tour session shortly after we received our daughter’s diagnosis as a Manifesting Carrier of Duchenne.
We knew very little about the condition and even less about the impact on females. I can’t even remember now how I found out about the event, I like to think fate was working its magic as it has connected us with the most wonderful group of people and support network.
I remember contacting Action Duchenne prior to the event to ask if it was suitable for us to attend as we didn’t have a son. We didn’t want to feel we were wasting anyone’s time. Right from the initial contact, we felt the warmth ‘yes! please come along, it would be great to meet you, we cover carriers in the session.’
Meeting the team
We had no clue what to expect – I think I had a formal corporate setting in my head, it was completely different.
Typically, we were running late so the session had already started, we weren’t met with the ‘you’re late eye roll’ instead we were warmly welcomed with a huge smile and a hushed hello, shown to our seats, and pointed in the direction of the tea & biscuits – of which there were plenty!
The session size was small, not too intimate that you felt all eyes on you, just the right size where you feel you can share and ask questions or just sit and listen if you prefer.
Questions were welcomed at any point; you were never made to feel like anything was too silly to ask. It felt like a structured conversation rather than a presentation.
An array of topics were covered and although it’s complex, with Duchenne you sometimes feel you need a science degree, it’s all explained in laymen’s terms.
On the odd occasion when it did get a bit too ‘sciency’ the Action Duchenne support team were on hand to spot the blank faces and check everyone’s understanding.
The session was broken up with fun DNA experiment, I won’t spoil the fun if you’re yet to attend and a hearty lunch with plenty of opportunity to chat and share stories and experiences with others.
I cannot recommend these sessions enough, you get the opportunity to ask questions you perhaps don’t often think of during appointments, you get to meet some wonderful people, be warmly welcomed into the Duchenne community, and come away with so much more knowledge of DMD and after all knowledge is power!
Peer-to-peer support – feeling positive for the future
