Rare Disease Facts – A disease is considered rare if it affects fewer than 1 in 2000 people. 300 Million people worldwide are affected by a rare disease. 3.5-5.9% of the population are affected by a rare disease. Both ARM and HD occur in about 1:5000 people making them both Rare Diseases. Visit National Organization for Rare Disorders (NORD) website for more resources and support.
Below is a poem which expresses a powerful reflection on the journey of living with a rare disease. The words really capture the resilience, strength, and hope that are constantly present even amidst the challenges. It’s a journey that requires endless love, determination, and a relentless belief in better days ahead. The poem weaves together the realities of life, from the highs to the tough times, while never losing sight of the strength that keeps pushing forward.
As we know, it’s a constant balancing act, but also one that brings moments of joy and growth, even in the midst of everything. How does one keep finding that hope, especially when those bumps in the road seem to keep coming? Dare to be rare, they say….
What is Rare?
Rare is Resilient,
Rare is Strong,
Rare is Brave.
1:5000 they say!
NICU noises,
Many specialists,
Hard decisions,
Scrambling for knowledge.
Surgery is on its way!
On to recovery,
Likely not the last,
Parents learning,
New routines.
All of this, crammed into each and every day!
Many ointments,
Special feeds,
Some with bags,
Some with diapers.
Growing, thriving, enjoying the small things as we may!
Whoa, hit a bump,
More appointments,
New procedures,
Found a solution…
Life goes on, laughter, fun, school days and sports to play!
Wait again, what’s ahead, another bump,
Quickly searching for answers,
Travel for appointments and procedures,
Exhausted and tired.
Hoping for a cure each and every day! Things always get better with time, this I believe, but hoping these bumps will go away! – Author anonymous
