I am Rose, and I was diagnosed with myasthenia gravis on Valentines Day, 2019.

I hadn’t been right for 2 months, becoming more tired, eyelids both drooping till closed, and my speech and ultimately my swallowing were badly affected. I started on a low dose of pyridostigmine, but the disease was going too fast and 10 days later I landed in hospital, unable to swallow or hold up my head, and choking from excess saliva induced by pyridostigmine. At times my husband had to support my head so I could breathe, and during the 5 weeks in hospital I also had a respiratory arrest.

One frustration was that so few of the staff knew of myasthenia, and didn’t realise the importance of the timing of medication. Even my GP had a steep learning curve, helped by the information provided by myaware. I have a pretty normal life now, with lots of tablets! Being immunosuppressed I am very careful, and my sons are extra protective as my husband died in 2020.

I grew up in Thailand, and lived in Papua New Guinea for some years, was a nurse and loved it, but getting myasthenia and my hospital stay was very frightening. My Christian faith is my backbone and huge support. Myaware too is a support, especially the Facebook group.

So it’s a pleasure to be able to give back a little financially.