Coping With Myasthenia Gravis

My sister was diagnosed when she was 15 and deteriorated quickly. The year after that, when they were trying various medications and treatment protocols on her, she was only able to go to school for 6 days! So obviously she repeated that year and after a thymectomy, numerous sessions of plasmaphoresis, chemo gamma globulins and approximately 60 pills that she takes daily, she manages to attend college most days. However, it is her attitude that amazes me - she is so positive and bubbly and doesn’t complain at all. she refers to hospital as “boarding school” and always receives such a warm welcome from all the nurses as they know her so well after her 6 years of frequent visits - she’s admitted at least twice a month, on average!

So if anybody needs help and motivation, I’m sure she’d be happy to help - send me a message and I’ll forward it to her. But for those of you who are struggling - my heart goes out to you as I’ve seen her struggle - when her swallowing was so bad she had to be intubated, or we had to dissolve her meds and it took her over an hour to swallow 1ml! I

t’s a tough illness that affects so much of your life. It’s certainly been a reality check for me and has brought our family so much closer together and allowed me to realize how much we have to be thankful for as we never know when it might be the end. There are always good things that come out of all situations - sometimes we just need to look harder to find them!