Mitochondrial disease (mito) can impact people of all ages. When we discuss 'you' or 'your' in this resource, we are including your child, family member, or friend living with or impacted by mito.

Summary

  • Before your appointment, gather your medical history and information about your symptoms. Take any information about other health professionals you see.
  • Call ahead and inform the receptionist of any additional requirements you may have, such as wheelchair access or visual or hearing impairments.
  • You should take essential documents like Medicare cards, medical records, medication lists, appointment referral letters, and the Australian Patient Care Standards for Primary Mitochondrial Disease.
  • During your appointment, be clear about your symptoms and concerns, and don't hesitate to ask for explanations or clarification.
  • If needed, take a support person with you. They can help you remember what was said or be there for you emotionally.

The information provided focuses on how you can prepare for your medical appointments. For example, for an appointment with your GP, endocrinologist, or dietician. It also focuses on how your mito specialist can support your ongoing care, to ensure you receive the right care.

Having a plan can help you make the most out of your appointment. This is true whether you are starting with a new health professional or seeing your regular one.

Build a care team

Learn more about members of a mito care team and their roles and responsibilities.

Find a health professional

Find a clinic or health professional who has knowledge of mito. 

Talk to your care team about mito

Information and resources for health professionals with limited knowledge of mito.

Care standards for mito

Recommendations for health professionals who diagnose and manage patients with mito. 

I remember receiving my diagnosis of mito, but the only words I remember from that appointment are, “You have mito. All the information was overwhelming, and I knew I needed to be better prepared for my next appointment. Making a list of all my questions helped me understand what was happening and what I needed to do next.

Adult with mito, 2024

preparing for mdical appointments

Mito specialist and collaborative care

Many people with mito have appointments with a specialist. A specialist is a health professional. They have had extra training and education in a specific area of medicine. For mito, the specialists are usually neurologists, geneticists, pediatricians, or metabolic physicians. They have the expertise to diagnose, treat, and manage mito. They are commonly referred to as a mito specialist.

Mito can affect any organ. So, your care may involve other specialists, such as an endocrinologist or ophthalmologist. They will usually work with your mito specialist to manage mito. Learn about the members of a mito care team for adults here or for children with mito here.

To learn more about how to access specialists, their fees, and appointments, or to get a second opinion, visit Seeing a Specialist, written by the Victorian Department of Health.

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Version: 2
Last reviewed: 9 May 2024

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