#rarediseasetruth

Each Thursday join us for #RareDiseaseTruth

The Jansen's Foundation founder, Neena Nizar is an incredible human and trailblazer! We love their campaign #rarediseasetruth! It is raw, powerful and brave! Daily we put on a smile, push through unimaginable exhaustion and no one really knows our truth - That rare life can be extremely hard, isolating and heartrending. Continuing what Neena started, every Thursday we will share a #rarediseasetruth from our community.

#RareDiseaseTruth Jacquie

"Because my daughter doesn't "look" disabled, people do not accept she has a rare disease."

"My adult child, who does not have OCNDS, has missed out. She has not had the best of me as a mum, as I was distracted with her sister with OCNDS, who took a lot of time away from her. This has impacted her life and our relationship."

#RareDiseaseTruth OCNDS parent
#rarediseasetruth Terri J.

"Said by a woman at church who met my family for the very first time. She should be VERY glad that there were 4 pews between us." OCNDS parent, Terri J.

Rare life is real life. Feeding tubes - a part of rare life most people don't have to think about. Rare Disease Truth Thursday inspired by the Jansen's Foundation.

#rarediseasetruth Melanie
#rarediseasetruth A.R. OCNDS parent

Thank you A.R., an OCNDS parent, for starting this conversation in our community and sharing your #rarediseasetruth. "It hurts my mama heart that our daughter has never been invited for a playdate or a sleepover. I am always inviting other kids over to our house so my daughter feels special. But I would love for her to be invited over for a playdate or sleepover two reasons. One, most importantly, for my daughter to feel loved and special. Two, just to have a mama break of respite.”

CONNECT WITH US | facebook | instagram | twitteremail 

Translate »