Georgina’s life changed completely the day her husband Peter started experiencing double vision.

The things many people without myasthenia take for granted, like swallowing, talking and walking, all became difficult for Peter. When Peter experienced the symptoms of a stroke, the couple first heard the words “myasthenia gravis” from their GP and from there, life was never the same.

This Rare Disease Day, those living with rare conditions are being asked to share their stories. We are honoured to be able to bring Georgina’s story to you, which not only shows how myasthenia has changed her life, but how myaware has helped her to cope.

Click the image below to hear Georgina’s story:

“Nothing prepares you for the life changes…”

Georgina was suddenly thrust into the role of carer: becoming the only driver, having to answer and make all of the phone calls and even having to learn how to manage Peter’s bad days, to help get things back on “an even keel”.

Georgina, however, was not alone in adjusting to these huge life changes. Myaware has been here to support her and Peter through their myasthenia journey in a number of ways.

From helping Georgina to claim Attendance Allowance, to connecting Georgina and Peter with other families who are facing similar challenges, myaware has helped them both to live “as normal a life as [they] can.”

“Myaware is a haven, the go-to, the place with the answers even if you haven’t figured out you’ve got questions.”

Georgina has found our group support sessions particularly useful, including our recent online Zoom sessions, which connect people living with myasthenia to share experiences, support and friendship.

“Whatever difficulty we face, there is always someone in the room who has faced it before and found a solution.”

We are the myasthenia community.

Support Georgina and other families living with myasthenia

We know that many of you will have similar stories to Georgina’s and have faced huge life changes. We are here to support you through your own myasthenia journeys via our free member services:

New Member Zoom Support Sessions
Regional Zoom Support Sessions
Benefits and Welfare Advice
Emotional Support and Counselling
Peer Support Facebook Groups

You are not alone.

We can only continue to support you with your help.

This year, due to COVID-19, myaware is projecting a loss of income from donations and events of £117,000. We have had to make some difficult decisions recently, including furloughing staff. We remain committed to providing the same quality of service and support that Georgina and Peter have received, but we cannot do it on our own.

We are the only UK charity solely dedicated to supporting people living with myasthenia and we will continue to fight myasthenia, but, as for many charities right now, there are challenges ahead.

Can you help us?

Your donation of £10 will help to ensure the vital support services, which are so important to Georgina and her family, can still continue to run.

We appreciate this is a difficult time for everyone and that you may not be in a position to support us financially. If this is the case, we would really appreciate it if you could share our appeal link on your personal social media pages, or with any family and friends you feel would be able to give.

For more information about myaware, visit our website and for more information about Rare Disease Day, visit https://www.rarediseaseday.org/

Thank you for fighting myasthenia together with us and we hope you stay safe and well.


Sarah Cuthell
Chief Executive Officer

Appeals