Education / Patient Community
FAQ
The AMDF aims to build a database of frequently asked questions (FAQ) to provide information for the mitochondrial disease patient community.
Do you have a question that would be useful for inclusion in this section? If so, please contact our website editor to discuss.
Forum
As part of its aim of providing support to the mitochondrial disease patient community, the AMDF has developed on online forum to provide a tool for submitting questions and sharing experiences.
Referral
The AMDF aims to develop a referral register of doctors interested in mitochondrial disease in your area.
Are you a doctor interested in mitochondrial disease and would you like to join our referral list? If so, please email the AMDF to join our referral register.
Patient Stories
The AMDF aims to promote awareness of mitochondrial disease by profiling some of our patient community members’ experience of living with a mitochondrial disease.
Are you a patient with a mitochondrial disease and want to share your story? If so, please contact our website editor to discuss.
Tom's Story
Our third child, Tom, is an extremely cheerful and loving six-year-old full of laughter and smiles, yet he has had a complicated medical history and has undergone over 26 general anaesthetics and medical procedures to keep him ... read more
Kara's Story
Kara, our 10 year old daughter, is the eldest of 3 children, with a maternal family history of good health. So, when our little redhead started looking like the gawky, uncoordinated, nonathletic 3-4yr old girl, my immediate reaction was to blame the poor athlete genes on the in-laws ... read more
Rose's Story
My names is Rose and I was first diagnosed with mitochondrial disease at the age of 20. I had not heard of this disease until after I had experienced an intense eight months in hospital. I always used to get the occasional stomach ache ... read more
Peter's Story
Our brother Peter is one of five siblings, all of whom have been diagnosed as having MELAS - a form of mitochondrial disease. He was 34 years old when he had his first ‘stroke like episode’ which was a great shock to us all ... read more
Judy's Story
Judy was born in 1933. There was no indication of any medical problems then or until she was well into her adult years, although she lacked hand-eye coordination and was not physically robust. The first signs of a problem were when she began to go deaf in the mid-nineteen seventies ... read more