The Myasthenia Gravis Rare Disease Network (MGNet) team created a song about the struggles of living with a rare disease, like myasthenia gravis.
Every Dose of Hope (Living with a Rare Disease)
Performed by Preethy Feit and Gulsen Oztosun
8 am to see doc one
Have to get some bloodwork done
A referral to doc number two
To get a scan and more testing
Looking for answers to find support
A guiding hand to lend comfort
I know that I’m just one in 10
A favor I’m requesting
Maybe it’s just stress
Maybe eat a little less bread
Maybe need more rest
Could this be all in your head?
Am working out the way to cope
Counting every dose of hope
Am trying to be who I want to be
Living with a rare disease
Awareness, funding and research too
Therapies for the next breakthrough
I may be rare but I can be
An advocate for tomorrow
I make this call, an aim to reach
The medical community
Raising voices to find the cure,
Paving the path to follow
Maybe it’s just stress
Maybe eat a little less bread
Maybe need more rest
Could this be all in your head?
Am working out the way to cope
Counting every dose of hope
Am trying to be who I want to be
Living with a rare disease
Am trying to be who I want to be
Living with a rare disease
