Emotional and Psychological Support
A new diagnosis of Pompe can be quite a shock. Along with managing numerous medical appointments, you will also be dealing with numerous emotions, which can understandably, be quite overwhelming.
If you find yourself struggling to deal with these emotions and fears, there is support to help you find your way.
We recognise not everyone will require the same level or type of support and these suggestions listed are just some of the supports you might consider. Always consult your primary health professional, like your GP, to make sure you are doing what is right for you.
- A patient peer support group (like the Australian Pompe Association) can put you in touch with other patients like you, that have been where you are.
- Friends and family are vital in supporting you through a diagnosis and also finding a path forward to living well with Pompe.
- Your own GP. A great resource we sometimes forget about when it comes to mental health. Your GP will be able to refer you to a mental health professional in your area and provide you with a mental health plan of 6 sessions covered under medicare. (this can be revised up to 20 sessions)
- Care for Rare is a fantastic resource, as a registered nurse trained in rare diseases (including Pompe) can help you find the referrals and healthcare professionals you need. This is a great service if you feel like you have fallen through a gap and are not sure what help and support you might need. Care4Rare_Patient_Brochure_
It is possible to live well with Pompe