Rare Disease Day 2020

 

rarediseaseday2020

In honor of Rare Disease Day 2020, we wanted to highlight one of the rarest flowers in the world. The Chocolate Cosmos is a flower native to Mexico. The species survives as a single, non-fertile clone created in 1902 by propagation. The flowers are a rich deep-brown color and grow to about 3-4 cm in diameter. As the name suggests, Chocolate Cosmos emit a delicious vanillin fragrance in the summer (also found in vanilla beans, some coffee beans, and some cocoa beans). Just as this flower has fought to continue to survive,  its strength and determination reflect its beauty. That same beauty is a reflection of the rare disease community. The beauty is Rare!

The Beauty is Rare
By Carol Knudsen

I've been sick for a while now
each symptom a puzzle piece
doctor after doctor
and still no relief

 It may be my mother
or even my friend
we keep looking for answers
will I be myself again?

And as if by chance
a connection is made
in the blink of an eye
everything can change

Being swallowed by darkness
stricken by fear
who do I go to?
there are no specialists near

Paralyzed in disbelief
frozen by the unknown
who can help me?
will I walk this alone?

Testing, surgeries,
and medications, too
names I’ve never heard before
this is a lot to go through

One night it hit me
in the midst of my pain
there were pieces of beauty
every step of the way

From the love of my family
to the doctors who cared
innovative procedures
surgeons practiced and prepared

New medications
fast-tracked for a cure
rare disease doesn’t own me
I will fight this for sure

Patient warriors showed up
jumping into the fray
support groups, lobbying,
Leading the way

Little by little
my strength began to bloom
I found strength in my weakness
and overcame my gloom

Out of the ashes
my life began to rebound
a change in perspective
turned my life around

Remember when you’re alone
and filled with despair
there can be beauty in ashes
the beauty is Rare

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PPRG6-500 Cover
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