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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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Jan 17, 2025 | 
epidermolysisbullosanews.com | Lindsey Shapiro |Steve Bryson |Marisa Wexler |Lena Riedl
A gene-editing therapy made to correct a genetic defect in the LAMB3 gene that’s known to cause junctional epidermolysis bullosa (JEB) worked as intended and restored more normal laminin 332 protein levels in skin cells from a JEB patient. To make the treatment more precise and safer, the scientists utilized newer gene-editing tools that are less likely to cause unintended DNA damage.
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Jan 9, 2025 | 
epidermolysisbullosanews.com | Patrice C. Williams |Steve Bryson |Lena Riedl
Note: This column describes the experiences of the author’s son with dupilumab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Jonah, my son with epidermolysis bullosa (EB), and I just made another trip to Chicago right before Christmas. This time there was no riverboat cruise, no Cubs game, and no time spent at the Bean.
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Dec 6, 2024 | 
epidermolysisbullosanews.com | Andrea Lobo |Lena Riedl |Marisa Wexler |Steve Bryson
Surgical correction followed by continuous compressive bandaging effectively treated hand finger adhesion and contractures in a woman with recessive dystrophic epidermolysis bullosa (RDEB), according to a report. RDEB patients commonly undergo hand surgeries to improve function, and may require orthoses post-surgery to preserve results. Patients usually need several procedures. In this case, compressive bandaging prevented the need for specialized orthoses, and no reoperation was needed.
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Dec 5, 2024 | 
epidermolysisbullosanews.com | Patrice C. Williams |Lena Riedl
Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different. My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with dermis-level scarring and the resulting disfigurement. He rarely gets anything more than a superficial, localized infection that can be easily managed with topical ointment. He’s never had to have an esophageal dilation.
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Nov 8, 2024 | 
epidermolysisbullosanews.com | Marisa Wexler |Lena Riedl |Andrea Lobo |Steve Bryson
Pain is a frequent problem for people with recessive dystrophic epidermolysis bullosa (RDEB), and available medications are often not sufficient to control it, a study reported.
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Oct 25, 2024 | 
epidermolysisbullosanews.com | Andrea Lobo |Margarida Maia |Marisa Wexler |Lena Riedl
RLF-TD011, an antimicrobial spray, will be granted European Union patent coverage for wound treatment in people with epidermolysis bullosa (EB). The Relief Therapeutics treatment contains highly pure hypochlorous acid, a chemical with antimicrobial and anti-inflammatory properties. RLF-TD011 is marketed as Nexodyn for the management of chronic and acute wounds and other skin lesions.
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Sep 27, 2024 | 
epidermolysisbullosanews.com | Steve Bryson |Lena Riedl |Andrea Lobo
The experimental therapy ELX-02 reversed the effect of nonsense mutations in skin cells derived from people with recessive dystrophic epidermolysis bullosa (RDEB) and junctional epidermolysis bullosa (JEB), a study found. Nonsense mutations in genes result in shorter, non-functional proteins, which commonly occur in RDEB and JEB patients, and ELX-02 was able to increase the production of those proteins.
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May 9, 2024 | 
epidermolysisbullosanews.com | Patrice C. Williams |Marisa Wexler |Lena Riedl
My husband, Matt, and I just returned from six days and nights in the Riviera Maya, Mexico. We stayed at an adults-only, all-inclusive resort and spent most of our time by the crystal-clear beach waters and the beautiful pool. It was just what my soul needed. I love my kids. I really, really do. I can’t imagine my life without them, and I would give the world for them. But I really needed this.
