Can you help to keep the myasthenia community connected?
“People at myaware know what it’s like to have myasthenia gravis, or to support someone who does.”
Luke was in hospital when he first heard the words “myasthenia gravis”. After weeks of being unable to eat or drink properly, as well as struggling to speak, Luke finally had a diagnosis. It was at this point that Luke turned to myaware for support and connection to the wider myasthenia community. This is his story:
“I spent three weeks in hospital, being tube-fed, examined, tested, prodded with needles and given treatments before I was finally able to go home. Fortunately, I am able to stay with family members who can support me in my continued recovery, as I still have to eat very finely-cut food (very slowly), tire easily, and sometimes slur my speech.
Having been a healthy and independent thirty-something only a few months ago, this has been an adjustment, although it pales in comparison with the terror you feel when you realise that you physically cannot eat or drink anything.
One of the first things I did after my diagnosis was to join myaware, and other family members have done so as well.
The biggest single thing they have given us is the ability to talk to people who have been in the same situation.
Neurologists know a lot about myasthenia gravis, and they were very good at explaining to me what the condition is, what the tests were for, and what my treatment was likely to be. But people at myaware know what it’s like to have myasthenia gravis, or to support someone who does.
Whether it’s from the staff at myaware or other members, sympathy and advice has always been forthcoming. On the phone to the support line, on the Facebook group when I was feeling depressed in hospital on a Saturday night, or in Zoom sessions with other new members, there is a comforting feeling of community, as well as people with real practical experience for how to deal with the day-to-day difficulties which can suddenly appear with this unpredictable condition.
Now, about six weeks on from my diagnosis, I am still staying with my family while I recover. I have good days and bad days, but both are getting better as I return to something approaching normality. I have begun working again part-time and have the advantage of a very understanding employer to support me in this as well. As my treatment begins to bring the illness under control, I hope to return to something approaching a normal life. Whatever happens though, I know that myaware will always be there to help me.”
For Luke, connection with others who understood what he was going through was essential to his recovery.
We need your support to keep the myasthenia community connected and to help reduce the isolation, fear, and anxiety that a myasthenia diagnosis can bring.
In light of the COVID-19 pandemic, we have been connecting our community through Zoom sessions, which over 1,000 people have found helpful:
“When we started on this journey we thought we were alone, but myaware connects you with so many others.”
“Good to see a few faces and say hello on Zoom. I'm glad you are there if we need you. You are a real gem.”
“Thank you for this morning, it was good to talk to people in a similar situation to myself. I'm not alone.”
Zoom sessions cost approximately £18,000 a year to run including technical fees, preparation, invites and facilitation. They are just one of the ways in which we support our members.