Harvard House employee Megan Hunter who has been living with Myasthenia Gravis since age 15 says, ‘The worst is being stared at or ignored because people do not understand my differences. I would prefer to be asked directly what is wrong with me. We are normal, we are special.’
One of 7000 rare diseases, this one is pronounced; ‘my-as-thee-nee-a graa-v-us’. If you know someone who can be bothered to live their best life despite having a rare disease, you can honour their courage by learning to say it correctly.
Megan suffers from fluctuating muscle weakness and fatigue, as a result she sometimes cannot swallow and has to tilt her head to do so. Her speech becomes slurred, walking is difficult and she can barely raise her arms above her head. Treatment can be administered in hospital when Megan needs a boost, there they connect her to a continuous machine whereby her blood is taken out, plasma is separated out and the ‘clean’ blood with artificial plasma is returned.
At the time of her diagnosis there was almost no support, today there is a Facebook community for Myasthenia Gravis suffers, however as each person diagnosed with this disease presents differing symptoms and responses, sharing is limited.
Now aged 27, Megan says, ‘I am not happy I have this disease, but it has made me a better person. I am now more compassionate.’
Megan wishes to create understanding, awareness and support for all rare disease sufferers who along with their families are invited to join a Rare Bear Picnic in Hillcrest on 27 February.
To show your support for Rare Disease Day you can shop for a “Rare Bear” at rarediseases.co.za. These crocheted toys are not bears at all but African animals made by previously unemployed women in the Johannesburg area. They cost R200.00 for two. One will be mailed to you and one will be gifted to a rare disease sufferer in hospital, 50% of people affected by a rare disease are children.
You can also buy Blue Ribbons or Colouring-In Pictures at R10.00 and R15.00 respectively.