I was diagnosed with Myasthenia Gravis disease in September 2007 after experiencing my symptoms for over 18 months.
I put it down to stress until I started to fall over and had trouble walking and carrying my baby.
Shortly after diagnosis my work manager asked me to assess my ability to continue working. At this point I was attending work unwell but because I only worked a three-day week I made extra effort to attend, even at the detriment of my health. I explored my options and realised I needed to resign or further risk my health. I still have days when I get down about the fact that this disease has taken away my ability to be employable. I now volunteer at a local school and soccer club. I feel the need to be upfront about my health so that I don't let anyone down, and so the people understand what my limitations are. This helps teach people in the community to be understanding of people living with any type of illness.
I am unable to travel to certain counties, as I’m ‘immune suppressed’. This has stopped me going on holidays with friends to places I'd love to see. I also avoid large crowds for this reason. I cannot walk long distances as I tire easily. My life is now restricted to one outing per day and usually have a rest/sleep in the middle of the day. My daughters have adapted to this; however, there can be times when it becomes hard for them. While I am currently stable, my disease can change at any time. My medications have side effects which need to be monitored through blood tests. I know with Myasthenia Gravis disease, nothing is simple! Because I "don't look sick" it's only those close to me that understand my limitations. I've always been a positive person and continue to be so.
Educating optometrists in relation to my disease is necessary because often the first sign is double vision or a droopy eye, which are symptoms of this disease. Many other sufferers went to an optometrist first and none of them were advised that they should see their GP for testing. I've educated my GP with my journey and she has subsequently diagnosed another patient.
Universities need to seek out rare diseases patients, to help with education process across many different medical fields. It’s important for those who live with a rare disease to share their journey with medical students to give them an understanding of the frustration of diagnosis, and ongoing health care. Knowledge and education are the keys, to long-term better outcomes for people living with rare diseases.