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_
Dr Sue Hawkins discusses some of the issues and emotions that come with living with Pompe Disease.
“Having Pompe Disease is not a race, it’s a marathon. Making sure you have the right emotional support around the whole marathon is important.
Seeing a psychologist can be really good. It can be a way of sorting through those difficult feelings”- Dr Sue Hawkins
Grief and Loss – Coping with the loss of a child to Pompe.
A diagnosis of infantile Pompe Disease is not always a terminal diagnosis. There are many factors that affect outcomes, such as early diagnosis and early access to treatment.
Sadly we have families here in Australia that have lost a child to Pompe. Dr Sue Hawkins talks to Nate’s family about the emotional impact on their family and the strategies to cope.
About Dr Sue Hawkins
Dr Sue Hawkins is a registered psychologist in Randwick Sydney, who has 15 years of experience providing valuable counselling in a warm, caring and sensitive manner. Her aim is to help clients regain control of their lives and get back on track.
Dr Sue Hawkins has qualifications in genetic counselling and has worked closely with many genetic support groups. She has also counselled people dealing with the issues associated with a wide range of genetic conditions.
Sue also has experience in helping people make decisions regarding genetic testing.
We thank Sue for her assistance in helping us highlight some of the issues faced by those living with Pompe.
If you feel you need immediate crisis support there are a number of organisations that can assist you including the ones below.