Raising Awareness

CYHU endeavour to raise awareness about of NF2 so that the public can gain a better understanding of how the condition may affect people’s lives. We do this by performing studies within the NF2 community, writing press releases and sharing publications produced by the people who know best. Below are some featured articles.

LIVING WITH NEUROFIBROMATOSIS TYPE 2 – LITERATURE REVIEW

As part of her nursing studies at the University of West Scotland, high-flying student and NF2 patient, Nicole Joyce, has published a literature review.  The review identifies themes from current research taken place on living with Neurofibromatosis Type 2 (NF2).

She says: “Due to the rare nature of this condition, it is important to raise awareness to ensure that when nursing staff do come across NF2, they have sufficient information and knowledge to administer effective care and promote independence in patients suffering this condition.”

You can now view Nicole’s study by clicking the link below.

Cohort-Literature Review-Nicole Joyce

THE IMPACTS OF HEARING LOSS EXPERIENCED IN NF2

CYHU team member Fred Suter has completed his investigative dissertation for university where he looks at the effects of acquired hearing loss.

For this he sent a Questionnaire to mostly NF2 affected individuals who have lost their hearing and asked them how this influenced them in terms of attitudes, linguistic challenges, psychological and identity issues and lastly how they cope.

See the results of this study and also open Appendix 1 Detailed findings while reading. The findings reinforce what we are doing for fellow NF2ers and send out a clear message.

Let’s stick together! Full list of documents:

CHALLENGES FACED AND OVERCOME BY THOSE LIVING WITH NF2

NF2: Our Journeys is a collection of inspirational life stories written by people with NF2 of all ages, backgrounds and experiences.

The book raises awareness of how NF2 can affect people by presenting a wide range of experiences in both health decisions and lifestyle choices. Raising awareness of issues experienced in NF2 and how they can be eradicated will help to improve the quality of care given to patients and their families.

You can find out more at https://canyouhearus.co.uk/what-we-do/nf2-our-journeys/ and purchase a copy of the book at https://canyouhearus.co.uk/shop/