Hi I’m Denise.

I’ll be 51 in May and I live in East Sussex.

I was diagnosed with myasthenia gravis 32 years ago and had a thymectomy at The National Hospital, London and was under the care of the late Professor Newsom-Davis. My symptoms were eye droop, my arms and legs were heavy and weak and I had trouble breathing. I take Mestinon and propantheline. It took 18 months to be diagnosed as my GP had no idea what was wrong. In desperation, they sent me to a neurologist and told I was lucky to survive as I had become dangerously weak; it had spread over my body. 

It took some time before my body stabilised and I had to re-think my career. I wanted to be an RAF pilot, but I'm now working part-time with community nurses as an administrator. I’ve been lucky and been able to lead a relatively normal life, I have to pace myself and know the symptoms when my myasthenia is starting up. The Sussex support group has been a blessing especially when you need advice or some reassurance.

My advice is take it easy, listen to your body, know your limits, pace yourself and take each day as it comes.