Hello, This Is Me

1 in 10 Americans has a rare disease or disorder. Globally, the figure is 350 million. Rare diseases are not rare! This poem will resonate with someone you know. Please read and share, Hello This Is Me, using the buttons below.

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Hello, could someone out there please fix me?

I never asked for or deserved this illness you see
Nothing is wrong, so it may appear
But each sun rise becomes another day of fear
Wake me up from this bad dream, how can this possibly be?

This might be hard for you to understand
I used to be the one lending the helping hand
Now I lay in bed everyday
Reminiscing the days, I used to play
Refusing to accept, as many would say, “this is god’s plan”

Test after test, diagnosis after diagnosis, can anyone help me please?
We’re sorry, what you have is a rare disease
As of now it is unknown to medicine
In a matter of time you may end up bed ridden
Overwhelmed with disbelief, uncontrollably crashing to my knees

I may be a child or have many children of my own
This sickness is not prejudiced, it has shown
My family’s love gives strength to push through
Though somedays the simplest things I cannot do
I pray this rare disease never intrudes, breaking your beautiful home

I know I’m not alone, others out there are suffering too
In the whole world we are still considered a few
Together we all want to fight
We need help to get the data right
I would do anything to never again walk in these unstable shoes

I know there is special people out there that could put a termination to this
Crushing this rare disease for the ones suffering and creating a life of bliss
What I can do is unknown
Hoping you can hear my desperate tone
I pray every night my struggles will end, in reality progress is my one and only wish

~ Crystal Beard, MdDS Warrior since 2016

Notes from the MdDS Foundation

Support Group members know that despite having flight-triggered MdDS, Crystal is a true MdDS Warrior and cheerier than her poem may lead you to believe. 😊 If you have or suspect you have MdDS, please consider joining one of our online support groups for sage advice and coping tips.

Crystal’s poem was submitted into the National Center for Advancing Translational Sciences (NCATS) “Rare Diseases Are Not Rare!” competition, which challenged individuals to use social media or art to effectively communicate and educate people about rare diseases.

As judging commences, we wish Crystal, Miranda McComber, Kimberly Warner, and all the MdDS Warriors who entered, the best of luck. Thank you for sharing a part of yourself with the greater Rare Diseases community, and for raising awareness of Mal de Débarquement Syndrome.

Kimberly Warner’s entry, Life Raft, is a digital booklet that you can read at www.liferaftmdds.com. SCROLL WARNING: Please view Life Raft on a day when the computer is your friend. Use a computer rather than your phone or tablet, to minimize visual overstimulation