Do you remember Maarten and Linus? That sweet baby photo. Those tiny faces. So much hope wrapped in one picture.
Nearly 10 years ago, we first shared news that was almost impossible to believe. Twin boys affected by X-linked hypohidrotic ectodermal dysplasia (XLHED) were treated before birth with an investigational therapy. And something amazing happened. They were sweating.
For families living with XLHED, that word, sweating, means safety. It means fewer fears about overheating. It means freedom.
A Study That Made History
Two years later, Dr. Holm Schneider and his research team published their groundbreaking research results from this study called Trial to Cure. The results were clear. Maarten and Linus were sweating normally!
The research did not stop with the twins. During the pandemic, two American moms, Emily and Laura, traveled to Germany while pregnant so their baby boys could receive the same prenatal treatment. They wanted a different future for their sons. Their boys also showed positive results. These outcomes helped lay the groundwork for the Edelife Clinical Trial now in progress.
Learn More about XLHED Therapy
Growing Up Strong
So, how are Maarten and Linus today? (See photo of them at the top) Dr. Schneider reports that they have developed well.
“They still sweat normally and enjoy all kinds of sports,” he said.
That sentence may sound simple. But families who live with XLHED know how big it really is. Sports. Running. Playing hard without constant fear of overheating. These are everyday moments many families once only hoped for.
Maarten and Linus may not fully understand it yet, but their lives changed more than their own story. They gave researchers proof. They gave families hope backed by real data.
Finley the Busy Five-Year-Old
The twins inspired Emily and her husband, Isaac, to choose the same treatment for their son, Finley, back in 2020.
“Because of the National Foundation for Ectodermal Dysplasias’ efforts and work, it had such a huge impact when I saw those twins,” Emily recalled. “It had been years before I had started a family when I saw it, but that image has been engraved in my head.
I remember my parents showing me that image of the twins, and they’re like, ‘This is big. It’s a life-changing deal for our family.’
“We’re really fortunate that we were able to join that, and be a part of that,” Emily said.
Emily hopes other moms see that the prenatal treatment does make a big difference. Finley sweats normally so Emily says she never stresses or has to think about him overheating.
“I know a lot of moms’ (of children with XLHED) biggest worry is overheating. If your child’s overheating, you’re worried about heat strokes. We just live a normal life, like going outside, doing fun things and not stressing about overheating. Worrying about a child that can’t sweat is really, really scary, and really hard to deal with, and there’s a lot of challenges with that. Finley does sweat and keeps himself cool.”
And that’s especially helpful since Finley is a very active five-year-old! He loves skiing, swimming, playing outside and jumping at the trampoline park.
“Finley’s a jokester,” Emily says laughing. “He’s great. He loves to say silly things and make people laugh, and he has a big personality. He likes to help his dad around the house, fixing things. He’s a helpful big brother. But, he has very high energy, and is always on the move!
The treatment gave Finley working sweat glands, but he does experience eczema, allergies and asthma.
“It’s not a cure,” Emily said. “But, Finley’s symptoms are milder compared to what it could be.”
The grateful mom says getting the treatment was definitely worth it.
Bennett, The Fast Kid
Emily played a big role in answering Laura’s questions and helping her choose XLHED therapy for Bennett in 2021. Today, Laura describes her pre-K kid as the sweetest boy who loves school. A natural athlete, Bennett hasn’t tried a sport he doesn’t like.
“I never thought we’d have a soccer star or a sports kid. He’s just so athletic and really good at every sport,“ Laura said.
Nicknamed “the fast kid” by the other soccer parents, Bennett typically scores every goal in their games. He also loves baseball, basketball, football, bike riding, ice skating and hoverboarding. This kid is active, and fearless!
And the great news is that Laura and Milo also never have to worry about their son overheating. Bennett continues to sweat normally. It all starts with those little beads of sweat on his nose.
As for other XLHED symptoms, Bennett has developed six permanent teeth so far and at least four more (already seen on X-ray) are expected to erupt. He wears a fixed partial on the upper. But, he has not had any issues with eczema, respiratory issues, dry mouth, dry eyes, nasal rocks or other typical symptoms.
Participating in Research
The family took Bennett to the Edelife Clinical Trial site at Cedars-Sinai in Los Angeles last fall as a part of the research follow-up. Laura called it a great experience.
“Everyone there was really excited to meet Bennett, because they had only ever been working with babies as part of the trial. Bennett obviously can talk and tell them, and hold a conversation. So, it was really cool,” Laura said.
Laura reflected on her adventure to Germany for treatment and how it seemed like a rough patch to get through at the time.
“The benefits of that small amount of discomfort were totally worth it. I can’t imagine having had not done it. I’m so glad that I didn’t let the travel to Germany and everything stop me.”
Would she do it again?
“Thousand percent!
It (ectodermal dysplasia) really is just such a non-issue, and I don’t know how else to convey that. And to me, the study is the reason for that. We just live life without any thought of ectodermal dysplasia, you know? Except for that twice-yearly dentist visit when I bring it up.”
Edelife Is Still Enrolling Participants for XLHED Therapy
The prenatal treatment that all four boys received is being tested in the Edelife Clinical Trial. It is enrolling 15-20 boys. If you are in the United States, you don’t have to travel as far as Germany like Laura and Emily! There are sites in St. Louis and Los Angeles. If you qualify for the Trial, participation is completely free.
Because of Maarten, Linus, Finley, Bennett and the brave families who followed, the future of XLHED looks brighter than it did a decade ago. Science takes time. A clinical trial takes courage. Progress happens step by step. But sometimes, it starts with two little boys in a baby photo. And a whole NFED community daring to believe that things could be different!
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