The AKU Society’s new Telephone and Online Counselling Service is now up and running! This is a free, confidential service for all UK AKU patients and family members.

This service is part of our Body to Mind Project which received Funding from the Coronavirus Community Support Fund, distributed by The National
Lottery Community Fund, Thanks also to the Government for making this possible.

In today’s blog Kym Winter (Lead Counsellor) tells us more about the new AKU Society Telephone and Online Counselling Service:

We hope that the AKU Society Counselling Service becomes a real resource for patients, family members and the whole AKU community over the coming months. Having worked with rare disease patients and organisations for several years, we are very aware of the emotional challenges of living with a rare disease.

We believe that looking after your mental health is a key aspect of living as well as possible with AKU. Living with any rare disease such as AKU can be challenging enough, even without the impact of COVID-19 and its effect on both everyday life and the disruptions to routine medical care.

With all mental health services under strain currently due to the pandemic, we are pleased to be able to offer AKU patients and family members quick and easy access to our new Service.

Living with a rare disease is psychologically and emotionally challenging in several ways:

  • Learning to become an AKU ‘patient expert’
  • Feeling different, and lonely or isolated
  • Establishing trust in health care professionals, especially if you have had a long journey to diagnosis
  • Dealing with difficult or unpredictable symptoms
  • Unpleasant treatments and tests
  • Worries about your future health
  • The psychological impact of genetic inheritance

As living with a rare disease happened within the context of your everyday life, it’s inevitable that the ‘ups and downs’ of both will impact each other. At the AKU Society Counselling, you can contact us to talk about anything that might be affecting your ability to live as well as possible with AKU.
This could be anything from:

  • Relationships – with a partner, your medical team or family
  • Anxiety or low mood
  • Body image or identity
  • Hopes and fears
  • Worries about the future
  • Dealing with diagnosis
  • Managing the emotional impact of symptoms
  • Coping with difficult tests or treatments

My team includes two additional rare disease counsellors, David and Rebecca. All counselling sessions take place via telephone or video-link (Eg Zoom, WhatsApp etc), and we can talk through more about how to make the most of these when you make contact.

If you’d like to know more about us (and also read some FAQ’s on AKU’s Counselling Service) please check out the new Counselling Service pages.

You can contact us direct on 01727 752147 or

The AKU Counselling Service is provided by the non-profit organisation ‘RareMinds: Mental Health for the Rare Disease Community’, and we are delighted to be partners for this project. We really look forward to becoming part of the AKU community over the coming months.