The Digital Support Groups are led by mito community members and offer you the opportunity to connect with your local community. Please scroll to the bottom to register for this Digital Support Group.
Get to know your host: Shelley Beverley
Introduce yourself and your role within the support group
I am originally from South Africa and moved to Tasmania in 2010. I have found connecting with others to be very beneficial and would love to continue to connect locally. My role is therefore to host and facilitate a support group in Tassie where we can share stories and resources.
Tell us a little about your journey with mito
I lost my mother and brother to Mito within 16 months of each other. I then received a diagnosis myself and have continued to learn throughout my journey. I have developed a strong passion to learn as much as possible about the disease and connect with others to hear their stories. I have established a strong team of specialists who can learn alongside me and support me to fight against the disease.
My diagnosis is MELAS, which currently impacts me with symptoms of bilateral sensorineural hearing loss, daytime hypertension and left thickening of the heart, diabetes (insulin-dependent), muscle fatigue and weakness, mild gastroparesis and high lactate levels. I am still learning a great deal and my main focus at the moment is to continue to create awareness of Mito and assist to legalise mitochondrial donation in Australia.
How have Support Groups helped you in the past?
Support groups provide a safe space to talk about our journeys and share our stories. It also provides an opportunity for us to hear from those more experienced or possibly resources we were not aware of. Unfortunately, this disease can make you feel incredibly alone and knowing that you have a support group who share these feelings can help you connect on a different level. It is always comforting to know we are fighting this together.
What atmosphere would you like to create in the group?
I would like for our Tassie support group to be a place where we can share our journeys, wherever we are! For us to feel that it is a safe and non-judgemental place to join, regardless of whether we want to verbally share or not. Connecting with each other allows us to ask questions we are not comfortable asking others and talking about anything and everything that mito impacts. I am hoping it is a space where we can feel positive to catch up and enjoy the time together.