Hi, I'm Sam and one of my closest friends has myasthenia gravis. With not a lot known about this condition, it's difficult to witness the frustrations and challenges that come daily for those who have to adapt to live with this condition.

My friend Amy is a mother to two beautiful boys and has a full-time working husband. Watching her carry out daily tasks such as laundry, cooking, shopping and even bathing her boys shows the true extent of what myasthenia can do to people who are doing their best to love a normal life. Attending hospital appointments leaves her needing to rest for days afterwards.

Even tasks that we take for granted such as being able to eat a meal without choking, washing her hair or even brushing her teeth proves to be difficult. It's hard for a family or friend to watch someone experience these struggles as no matter what support you offer to give, there's nothing that we can do to help with the fatigue and symptoms they experience. Whilst I have been out with Amy I have witnessed first-hand how a few able-bodied people can treat those who have to rely on a wheelchair or some other form of mobility aid to get around.

It isn't a pleasant experience, especially on those days when she has very little energy and her facial muscles have fallen. Despite all this, Amy is able to remain strong and hopeful with a sense of humour and has built some wonderful online friendships with others who struggle with the same or similar conditions.

I'm hopeful that some day there will be a lot more awareness of myasthenia and that an effective treatment will become more widely available.

As much as it's hard to see you facing these daily struggles, we want you to know that we love the time spent with you whether that's climbing a mountain, daily shopping, trips to the beach, a quiet day drinking tea or maneuvering a wheelchair around the not so friendly wheelchair shops!