Some of you may have read Amelia’s story before, as I wrote about her last year, but I thought it would be great to get her story out again, as she is such an inspiration.
I’m Amelia. And this is my story📖
I have Myasthenia Gravis (MG)
You may look at me and think ‘what is wrong with her’ or you may think ‘she looks normal’.
That’s because mg is an invisible illness. It’s an auto immune disease. Its very rare, very few people have even heard of it! (I am the only child in Scotland to be known!)
MG affects all different muscles in your body. The symptoms are limb weakness (arms and legs), droopy eye, weak facial expressions, heavy neck, struggle to swallow and in a very bad situation your breathing can go. This is called an ‘MG crisis’, where you may need to be ventilated. Everyone is different with it though. I have it everywhere, all over my body, but it could just affect a few muscles or it can affect them all!
It is caused by a signal that goes from your muscle to your brain, that doesn’t complete properly, little bugs start attacking it for no reason. There is no cure!
I was diagnosed in Feb 2014. But before that there was nothing wrong with me! I was very healthy. I was a normal girl.
I had to survive by myself for 4 months, all the doctors I went to thought it was behaviour!! It was a very frustrating time for me! Nobody believed me! I got bullied. I felt really alone and I didn’t know what to do, nobody listened to me!! It eventually got really bad where it stopped me doing really simple things. I struggled to get it in the morning, I had no energy and I lost a lot of weight. After a long time we never gave up! I finally got a referral to a hospital, Victoria in Kirkcaldy by my optician! 19th December 2013. The children’s specialist mentioned Myasthenia Gravis, I had to get several tests taken. The blood test to confirm diagnosis took 2 months to come back. It was confirmed I had MG. It was a massive shock for everyone around me Family, friends😮 but most of all I didn’t know what to do, I was really down, so many questions like WHY?! Nobody could answer me. It took me ages to actually believe that I had a serious muscle condition. At the same time I was kinda glad somebody said there was something wrong with me because I didn’t know what was going on!!😥 But it turned out I would have it all my life, I would need to have medication to manage it, my life would change!😞
I was then admitted to the Royal Hospital of Sick Kids Edinburgh ASAP. I was started on medication straight away and since then my life has changed so much! I have had all different kinds of treatments, blood transfusions (plasmapheresis), drips, feeding tubes, operations (open heart surgery) lots of needles💉, loads of different medications, 999 trips, and endless hospital admissions🏥 (my worst experience was when I was in yorkhill for 9-10 weeks in HDU. I had to b on a ventilator because I wasnt able to breathe for myself. It was very, very scary!)
My day is managed by medication, My muscles tell me when I wake up what kind of day I’m going to have. It’s hard to organise things in advance. I have to stay away from anyone that isn’t well that can spread to me because it can make me very unwell because I have no immune system so I can’t fight any bugs.
It has been a very scary, up and down roller coaster for me and everyone around me! It is a very hard condition to have and very unpredictable. One minute you can be fine and the next I might not be able to move at all. Me and my family have had to change our lives to fit it around me. We do cope though, it is possible!! It may seem it isn’t but you have to stay strong and think positive!! I have amazing friends and family around me! I couldn’t ask for better people!! They have all been amazing! Very understanding ❤️
Even with everything I have been through, having MG has made me stronger !!!
‘I have MG, MG doesn’t have me!’❤️💪🏻 – my favourite quote !
Thank you for reading this (my little story)☺️.
Amelia X MG warrior💪🏻
Just a quick note to you, Amelia was awarded dremaflight 2016 by all the nurses/doctors in the Royal Hospital sick kids, a testimony to her great attitude and upbeat attitude. If you’d like to know more about how MG affects us, the current treatments available or research going on, visit Myaware for loads of info. Amy.