Recognizing Rare:
Working together is needed to raise awareness of laryngeal clefts.
By Deb Bachman, LCN Co-Founder and Program Director
I have explained laryngeal clefts numerous times over the past two decades. Unknowingly, each time I mentioned or explained laryngeal clefts, I was bringing awareness to this little known birth defect. It was never my intention to do so, but it is an additional role, a necessary role, given to parents of a child born with this hidden cleft. We become advocates for our children. We become decision makers and trail blazers as we search for ways to help our child born with a laryngeal cleft.
As a mom, I knew my son’s type 4 cleft was rare, and yet somehow, it still shocked me to discover that many medical professionals had not heard of it. I should have known better because when I graduated nursing school in 2005, I had received minimal instruction on rare diseases and disorders. With so much to learn and limited time spent in medical or nursing school, it makes sense to focus on more common conditions.
“But what happens to those who find themselves facing one of the over 7,000 known rare conditions? Of these 7,000 conditions, only 5% currently have treatments. Where does that leave the remaining 95%?”
Three years ago, I learned of an event called Rare Disease Day. I virtually attended conferences sponsored by the National Institutes of Health and the Food and Drug Administration. I was amazed to hear about all the agencies, nonprofit organizations and individuals who are involved in raising awareness and generating support for all those who are on a rare medical journey. I never knew this event existed, even though my family is very much walking a path with no known cure.
As I watched, I knew that someday I wanted to attend in person. Hearing from young adults dealing with chronic health issues, using their voices to bring awareness and change, was powerful. Listening to the progress being made for certain conditions gave me hope. Hope that one day, laryngeal cleft research will bring forth both answers and solutions.
Rare Disease Day, a global initiative, is held annually on February 28, or on the rarest day of all, February 29.
Monuments and public buildings around the world will be lit up in blue, green, pink and purple lights, displaying the Rare Disease Day colors. People are encouraged to “show your stripes” by wearing zebra-striped clothing. No zebra stripes? That’s OK, anything with stripes will do. It’s a day for individuals to share their rare disease or rare disorder story, share their experiences, and share their hopes for the future.
Laryngeal Cleft Network stands with you, as together, we work towards awareness, early diagnosis, and effective treatment of laryngeal clefts. Hopefully, waiting years for this diagnosis, especially for those born with a type 1 or 2 cleft, will soon be in the past. Until then, we encourage you to explain laryngeal clefts to others whenever the opportunity arises. Each explanation matters because it spreads awareness about this hidden cleft.
Join us in showing your stripes, sharing your stories and working together to close the gap.