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2 weeks ago | 
epidermolysisbullosanews.com | Patrice C. Williams |Lindsey Shapiro |Patricia Inacio
He checks in with her and tells her he misses her when she’s gone. She tries to like sports and ask questions about the subject, just because she knows how much Jonah cares about it. She sends him photos when she’s on vacation. He regularly sends her the dumb blue Grinch meme talking about knee surgery. (I don’t get it.) They have inside jokes. Nurse Jessi joined us three years ago as the Monday and Friday nurse for Jonah, who has epidermolysis bullosa (EB), and it was a match made in heaven.
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4 weeks ago | 
epidermolysisbullosanews.com | Marisa Wexler |Steve Bryson |Patrice C. Williams
A Phase 2/3 clinical trial testing AC-203 (diacerein 1% ointment) in people with epidermolysis bullosa simplex (EBS) is recruiting participants. The trial, EBShield (NCT06073132), seeks to enroll approximately 80 people ages 6 months and older with localized, severe, or intermediate EBS. To be eligible for participation, patients must have EBS-related wounds on at least 3% of their total body surface area, not counting the palms of the hands or soles of the feet.
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1 month ago | 
epidermolysisbullosanews.com | Molly Rozelle |Patrice C. Williams |Andrea Lobo
Living with epidermolysis bullosa (EB) is a daily lesson in resilience. One challenge that doesn’t get enough airtime: our teeth. If you have EB, or care for someone who does, you’ve probably noticed that dental problems come with their own special brand of chaos. I learned this the hard way: by avoiding the dentist for a decade, only to face a marathon of crowns, fillings, and pain that I’m still working through.
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1 month ago | 
epidermolysisbullosanews.com | Andrea Lobo |Patrice C. Williams |Marisa Wexler |Steve Bryson
People with epidermolysis bullosa (EB) experience a deterioration in oral health, which is linked to poor health-related quality of life. That’s according to a study in Germany, which also found patients with dystrophic EB had poorer oral health and worse oral health-related quality of life when compared with those with other EB types.
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1 month ago | 
epidermolysisbullosanews.com | Patrice C. Williams |Lindsey Shapiro |Lena Riedl
It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (EB) and wasn’t supposed to make it to his first birthday, is going to test for his driver’s license tomorrow.
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2 months ago | 
epidermolysisbullosanews.com | Molly Rozelle |Lindsey Shapiro |Patrice C. Williams |Lena Riedl
I’m currently working on accepting my physical imperfections. At this point in my life, motherhood and epidermolysis bullosa (EB) have been the greatest contributors to insecurities about my appearance. With motherhood, my body has transformed into various shapes and sizes, while EB has left me with scarring and nail dystrophy.
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2 months ago | 
epidermolysisbullosanews.com | Marisa Wexler |Patrice C. Williams |Lindsey Shapiro |Margarida Maia
France-based pharma company Theravia has obtained rights to an experimental molecule that may be used to treat epidermolysis bullosa (EB). The molecule, known as DCN-tCRK, was discovered by scientists at Tampere University, in Finland. Under the new licensing agreement, Theravia will be in charge of further drug development and conducting clinical trials to test the investigational treatment.
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2 months ago | 
epidermolysisbullosanews.com | Steve Bryson |Marisa Wexler |Patrice C. Williams
The stem cell therapy CORDStrom, in the pipeline at Inmune Bio, was found in a clinical trial to reduce itch and pain in children — from infants to teenagers — with intermediate and severe recessive dystrophic epidermolysis bullosa (RDEB), new data show. The treatment candidate also reduced disease activity and skin involvement for the study’s participants, who ranged in age from 6 months to 15 years.
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2 months ago | 
epidermolysisbullosanews.com | Patrice C. Williams |Steve Bryson |Margarida Maia
Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college. It’s a college we’ve never heard of, and he has zero desire to go there, but still. He’s made it to the age where we have to start thinking about college.
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2 months ago | 
epidermolysisbullosanews.com | Steve Bryson |Patrice C. Williams |Andrea Lobo
A topical ointment containing diacerein, an arthritis medication, promoted wound healing in a 5-year-old girl with hard-to-treat recessive dystrophic epidermolysis bullosa (DEB), a case study reports. “These data characterize diacerein as a potential candidate for improving wound healing in RDEB through its impact on inflammatory [cells],” researchers wrote.
