Turmoil, anxiety, stress, disquiet, agitation,
confusion - some words that describe my six
year journey from symptoms to diagnosis.
Over twenty years ago my GP had never had a
patient with Myasthenia Gravis, so it was a
‘bouncing ball' from one specialist to another
searching for answers.
It is known that the earlier the diagnosis the
more likely it is that the condition can be
adequately managed.

So, my wish for those who are going through
that process is that you listen to your body, be
assertive and ensure that you get the possible
outcomes in relation to living a long and
meaningful life.
Remember that ‘Patient Voices Matter' and also
that family and friends are so important in
helping you cope with living with a rare disease.