In honor of International Rare Disease Day, a day designed to bring awareness to the many rare diseases which are low in prevalence by high in complexity, I want to encourage you to check out the NFED webpage and the NFED Facebook Page.
For those of you who don’t know, my son and I are both affected by Hay Wells Syndrome, which is one of the ectodermal dysplasias. The NFED is dedicated to bringing help and hope to families affected by ectodermal dysplasias worldwide. I’ve been fortunate enough to grow up with them practically in my backyard. I also now serve as a Family to Family Support Liaison for them, a role I started this year.
Just this last week, I received an email from a new Mom, through my website, whose ten day old baby was just diagnosed with Hay Wells Syndrome. I was able to offer her encouragement and hope, and point her toward the NFED. It’s emails like that one that prompts me to talk about ectodermal dysplasias here and how they affect our lives.
For me, Hay Wells Syndrome means that I have no hair, only two natural teeth, no eyelashes or eyebrows, sensitive skin, and am unable to sweat properly. I also am prone to sinus infections, since I have no cilia in my sinuses, and have conductive hearing loss.
For Mister, Hay Wells Syndrome means that his hair is abnormally textured and missing in some places, he has fewer than typical permanent teeth on xray, has no eyelashes or eyebrows, is prone to skin erosions, and unable to sweat. Temperature control is our biggest concern with him. He’s had quite a few surgeries on abnormally formed tear ducts and has to keep ear tubes in place to prevent further hearing loss and infection.
Our family is proud to help with awareness and fundraising projects whenever we can.
To that end, I want to tell you about a neat opportunity to help raise funds for the NFED. It’s called Shamrocks and Shenanigans, and it begins tomorrow, March 1st and runs through March 17th. It is our March fundraising effort, and Mister could win a Kindle Fire if he raises $3000.
You can help him by making a donation to the NFED and writing “in honor of Zane Higgins” in the “What prompted you to donate to the NFED” box.
Even if he doesn’t win a really cool prize, it would mean the world to him (and me) if you helped us raise funds and awareness!