Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.
Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own.
‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.
It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor.
I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.
Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.
They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis.
While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.
So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:
- muscle weakness
- double vision
- droopy eyelids
- constant heavy limbs
- squint eyes
- difficulty speaking
- difficulty swallowing
- their limbs give out