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: Melanie Pfeiler
Introduce yourself and your role within the support group
My name is Melanie Pfeiler. I have been involved with the Mito group for the last 3 years and started helping out with the support group around 12 months ago and then took over as the Adelaide lead this year. Having a background in Audit and Risk, I also help with the Mito Foundation Risk Committee.
I work full time and my husband and I have 3 children aged 5, 7 and 14. We have recently found that our youngest child is autistic and our middle child has several learning disabilities, ADHD and dyslexia. My free time is taken up mostly with helping my children with their school work and I enjoy baking and running (but now in a modified version).
Tell us a little about your journey with mito
I became involved with the Mito Foundation when it was suspected my identical twin sister had Mitochondrial Disease. It’s been an 8 year (or more) long battle for her and slowly she has been deteriorating and is mobility impaired. A few years ago she came across the Mito Foundation and asked her GP if it could be Mito. Her GP told her that Mitochondrial Disease was a childhood disease and besides which, no one in Adelaide specialised in the disease. Through support from the Mito Foundation, my sister was included in a research study. To help my sister, as an avid runner, I started running the Bloody Long Walk to raise funds and awareness. Two years ago I started developing symptoms and conditions that were ‘rare’ for someone of my age and fitness. Too many ‘rare’ conditions to be coincidental. I started seeing the same specialist that my twin sister was seeing and found that I had the same mtDNA mutations. We are still ‘under investigation’ because it is unknown if the type of mutation we have is disease causing. My hope is that:
- The testing and research continues so that diagnosis can be determined and provided sooner so that patients don’t have to wait years for an answer
- GPs are familiar enough with the disease to provide the correct information
- That women who have the mtDNA mutation have the option for Mitochondrial Donation.
How have Support Groups helped you in the past?
Support groups have helped me by finding other specialists and treatment options for Mitochondrial Disease. It is encouraging also to know that all the little symptoms I have had are common for those with Mitochondrial Disease. That it’s not all ‘in my head’. It’s also rewarding helping those that are going through the same struggles. To know that they are not alone and that we are here for them if they need us.
What atmosphere would you like to create in the group?
An open and comfortable atmosphere where people feel they can share their stories and challenges.