Information for Undiagnosed Patients
COULD I HAVE MITO?
Many experts refer to mitochondrial disease (mito) as the ‘notorious masquerader’ because it mimics so many other different illnesses.
If you have symptoms associated with three or more organs and/or have any ‘red flag’** symptoms, please speak to your GP about mito.
The Mito Foundation believes there are thousands of patients in Australia, who are un- or misdiagnosed and do not have access to the specialist care they desperately need.
RECOGNISING MITO
What are the symptoms of mito?
Mito can be summarised as…
any symptom, in any organ, at any age.
The diagram below shows the organ systems that may be affected and the wide range of different symptoms that can be associated with mito.
RESOURCES
An Introduction to Mito -
Patient Information Factsheet
This factsheet includes the diagram shown above as well information on managing mito.
Mitochondrial Disease Health Professionals Guide
This guide was developed to help health professionals better understand mito and give the best possible care to those affected. To request a printed version to pass on to your doctor, please contact helpline@mito.org.au.
Recognising Mito -
GP Infographic
This infographic is aimed at GPs and includes information about possible symptoms. It is a useful resource to print and give to your doctor.
WHY MAYBE IT'S MITO
We know that one of the most common challenges mito patients face is speaking with GPs who are unfamiliar with mito*. Due to the complexities of mito – it can cause any symptom in an organ in any age. It is frequently un- and misdiagnosed.
TELL YOUR GP ABOUT ‘MAYBE IT’S MITO’
Whether your GP knows about mito or not, please encourage them, and other GPs in the practice, to complete an Australian Doctor education module about mitochondrial disease. The module ‘Maybe it’s Mitochondrial Disease’ attracts Continuing Professional Development points.
The Maybe it's Mitochondrial Disease module is currently under review and re-accreditation for the 2023-25 CPD Triennium.
Download and print a flyer for your GP, which contains information about the module. You can also download and personalise a letter to your GP to encourage them to learn more about mito.
FINDING A HEALTH CARE PROFESSIONAL
The Mito Foundation understands that finding health professionals who are familiar with mitochondrial disease (mito) can be a frustrating experience. To try to ease this stress, we have collated an ever growing list of health professionals including neurologists, GPs, neurogeneticists, metabolic disease specialists, and allied health professionals who have experience in diagnosing, treating, and managing people with mitochondrial disease or suspected of having mito. Please contact the Helpline to find health professionals in your area.
If you have a great GP or another health professional who understands mito, please encourage them to join the Mito Professionals Directory and help more mito patients. Invite them to find out more by calling the foundation on 02 8033 4113, emailing info@mito.org.au or by visiting:
PATIENT SUPPORT
The Mito Foundation provides a variety of support services for people with mito and those awaiting a diagnosis.
Whether you need help finding a medical specialist, information about government benefits, want to hear about the latest research or would like to contact others affected by mito…or you simply need an empathetic ear – we are here for you.
YOUR DONATIONS AT WORK
The Maybe it’s Mito education program was funded thanks to the generous support of the Mito Foundation’s donors. It will have a direct impact on thousands of Australians affected by mito.
*Data from The Mitochondrial Disease 2018 Australian PEEK (Patient, Experience, Expectations and Knowledge) study.
** Red flag symptoms can include diabetes, seizures and ‘salt and pepper’ retinopathy. Find out more in our Infographic. Print and take the infographic to your GP to assist in discussion.
Disclaimer
The Maybe it’s Mito content has been produced by Saatchi & Saatchi Wellness in partnership with Australian Doctor Group, with an independent educational grant from the Mito Foundation.