A myasthenia diagnosis can change your life irrevocable and it will also have a huge impact on the lives of those closes to you. This May, myaware will be holding its first awareness month and the theme is, 'You, me and myasthenia'.
One of our main awareness month objectives is to look at how we can support the wider family unit to live well with myasthenia. We have listened to feedback from our members and it is clear that children whose siblings or parents have received a myasthenia diagnosis are in great need of support. A myasthenia diagnosis can be exceptionally difficult for an adult, but for a child whose mum, dad, sister or brother are diagnosed, it can be confusing, worrying and very scary. Myaware member Chelsea Owen describes how myasthenia has affected her family:
"I am a 27-year-old mum, my daughter is 5 years old and I've had myasthenia gravis for six years. My symptoms are difficult to manage and very unpredictable. My daughter is the person who sees my difficulties the most. She has witnessed the impact that this has on me, things most adults don't even see in their lifetime. She has seen me in ICU twice this year, plus several admissions over the years. She's seen me with a nasogastric tube, central lines, and struggling to breathe. She's seen me after surgery. At home she sees me take a lot of medications; she sees me struggle to open up a bottle of milk for her breakfast, and not being able to finish the bedtime story due to dysarthria. From a very young age she has been aware that I have been unable to carry her like other mums carry their children. My daughter is a tough kid, but I am more than aware that my life with myasthenia has a huge impact on her life and I wish there were some support services available to help her through this."
By making a donation of any size, you can help myaware to support people like Chelsea and her daughter. Your donation would be used to help provide regional support events which are appropriate for the whole family to attend and information aimed specifically at helping children and young people to have a better understanding of myasthenia, therefore reducing feelings of isolation, confusion and anxiety. Remember, that if you are a UK taxpayer, Gift Aiding your donation means that we can reclaim the tax and increase your donation by 25% at no extra cost to you.
Donate to an appeal of your choice below.
Make a general donation to our Spring Appeal. Selecting general will enable myaware to direct your donation to where it is most needed.
Donate to our support services.
Donate to raise awareness of myasthenia.
Donate to fund research into myasthenia.