Patient and Dermatologist Raise Awareness of Epidermolysis Bullosa With YourUpdateTV

Henry DeAngelis and Dr. Lisa Swanson Team Up with Chiesi Global Rare Diseases to Shed Light on Epidermolysis Bullosa (EB), a Rare and Painful Skin Disease Affecting Children and Adults Across the U.S.

NEW YORK, Aug. 06, 2026 (GLOBE NEWSWIRE) -- Imagine skin so fragile that something as simple as a hug, a clothing tag, or a stumble could cause painful blisters and open wounds. That’s the reality for people living with Epidermolysis Bullosa — or EB — a rare inherited condition that affects the skin and can also impact the mouth, throat, eyes, and digestive system.

Around 200 children are born with EB in the United States every year, and an estimated 3,800 people currently live with the disease nationwide. For a long time, families had very few options beyond managing symptoms one day at a time. However, in the last few years, treatment options have become available to help manage this condition.

Recently, in partnership with Chiesi Global Rare Diseases, Henry DeAngelis and dermatologist and EB specialist Dr. Lisa Swanson participated in a nationwide satellite media tour to help more people understand EB, recognize the signs and symptoms, and know that there is hope for this community.

What is epidermolysis bullosa, or EB?
Dr. Swanson explains that EB is often described as the ‘worst condition most people have never heard of’. It’s a group of rare, inherited skin fragility disorders in which the skin is very weak and fragile. Skin is normally built to serve as a barrier to the outside world, and in EB, one component of that barrier isn’t working properly, or may be missing altogether. As a result, even minor friction or trauma can lead to painful blisters and open sores that are slow to heal, prone to infection, and can cause significant scarring over time. EB always affects the skin, but it can also affect the mouth, throat, eyes, and digestive system. About 200 babies are born with EB in the United States each year, and there is an estimated 3,800 people in the U.S. currently live with the condition.

What has day-to-day life with EB actually looked like for you and your family?
Henry shares that since he was born, he and his family have worked to manage the daily struggles of EB – a balancing act between wound care, infection management, and pain management, alongside living a full life that includes work, school, and a social life. Many weekends during his childhood were spent traveling to clinical trials, since there were no EB-specific treatments available at the time, which made for an isolating experience. Over the past couple of years, Henry has turned that experience around, becoming an advocate and channeling it into something empowering.

What treatment options are available today for people living with EB?
Dr. Swanson notes that until just a few years ago, there were no FDA-approved treatment options for EB, and the condition was managed primarily through various wound care strategies. Since 2023, however, several treatments for epidermolysis bullosa have been approved — a major breakthrough for patients in the EB community. Henry adds that living with EB looks very different than it did just a couple of years ago because of these treatments. For the first time, the EB community has hope, which he calls a powerful tool. He encourages anyone living with EB to talk with their doctor about which treatments might be right for them and to advocate for themselves, noting that advocacy has been a large part of his own journey and success.

Where can we go for more information?

EB community has hope, which he calls a powerful tool. He encourages anyone living with EB to talk with their doctor about which treatments might be right for them and to advocate for themselves, noting that advocacy has been a large part of his own journey and success.

Anyone affected by EB, or caring for someone living with the condition, is encouraged to talk to their doctor about diagnosis and treatment options. For more information, visit understandingeb.com.

*YourUpdateTV is a property of D S Simon Media. The video included and released was part of a media tour that was produced by D S Simon Media on behalf of Chiesi Global Rare Diseases.

Media Contact
Michael O’Donnell
D S Simon Media
212-736-2727
modonnell@dssimon.com

A video accompanying this release is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/99f08bd1-73a6-4adc-865f-d58a185a598d