Imagine going 37 years without knowing why you faced so many health struggles. That was Lindsey’s life until she finally got answers. In this blog, she shares her journey from silence to strength, how she found community, and why she’s determined to advocate for her kids.
Knowing I Had Incontinentia Pigmenti Earlier Might Have Changed My Life
Rhonda spent decades not knowing that incontinentia pigmenti (IP) was the cause of her symptoms, losses, and struggles. Learning the truth brought clarity. Now, she shares her story to help others feel seen and empowered to live fully with IP.
Discover a Newer Syndrome: TSPEAR-related Ectodermal Dysplasia
Never heard of TSPEAR-related ectodermal dysplasia? You’re not alone! It’s one of the more rare and newer types. Read this blog to learn more. Two moms share their honest, real-life stories about getting a diagnosis, navigating symptoms like missing teeth and overheating, and finding support.
Find Out How Six Boys With XLHED Are Sweating Normally
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
How Clouston Syndrome Has Impacted Three Women’s Fingernails and Life
Clouston syndrome can cause significant nail abnormalities which can be a source of physical and emotional pain for many women. Read their stories for how they cope. Plus, download our new library article written by dermatologists on how to best treat the nails.
Longing for a Community of People Who Understand
Nicholle was searching for someone who understood what it’s like to always smile with your lips closed so people don’t see your missing teeth. Who know how frustrating it is to visit dentist after dentist trying to find someone who actually wants to treat you. Were there adults out there who know the pressure of trying to find more than $30,000 just so you can have teeth to bite into chicken with? Read her story to learn about her search and how she’s relieved to no longer feel so alone.
Caring for Our HED Baby Down Under
Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until 16 months that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.
My Son With Incontinentia Pigmenti
Boys affected by incontinentia pigmenti typically do not survive pregnancy. The condition is an X-linked dominant “lethal” condition. Meet Jamistyn, a 6-year-old boy with IP who not only survived but is thriving! Read more about his extremely rare story!