PeDRA Pearls

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. Hit play to learn about PC Project through a special interview with Janice Schwartz, PC Project’s Executive Director. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

This is a rerelease interview from October 2021 with the National Eczema Association.

Eczema’s range in severity means each patient experience is different from the next and no two stories are the same. Young Ella has lived with severe eczema since she was 8 months old. Now, as a 6-year-old in first grade, she’s finally able to experience some relief and feel like a “normal” kid. Ella and her mom, Amy share their story, how the National Eczema Association helped them navigate this disease, and how Ella was finally able to eat ice cream and go to the beach.

National Eczema Association

In October 2021, PeDRA highlighted the National Eczema Association. This incredible organization supports patients, families, and caregivers, through a variety of activities and resources. NEA also supports research through a robust funding program, as well as its own research through surveys and the EczemaWise app. NEA’s Vice President of Scientific and Clinical Affairs, Wendy Smith-Begolka, MBS discusses the research taking place now and how future research will impact patients, families, and caregivers.

www.nationaleczema.org

Part two of our community spotlight tells the story of a shy young woman struggling with atopic dermatitis and her journey to self-confidence through her experiences at Camp Wonder as both a camper and then a counselor. Mikaela, along with her mother Diana discuss how life-changing Camp Wonder has been for them both. Learn all about the Leap of Faith tower, and see firsthand how Camp Wonder changes lives.

Children with skin diseases don’t get to experience childhood in the same way as children without skin diseases. In this Community Spotlight, we sit down with Francesca Tenconi, the founder and executive director of the Children’s Skin Disease Foundation to talk about their program Camp Wonder! Camp Wonder is a place where children get to be kids, without the burden of their disease taking center stage. Camp Wonder’s unique approach allows children to put their childhood first and gives their parents and siblings a much-needed rest from doctor’s appointments, sleepless nights, and all the other burdens that come with skin disease. Learn more about CSDF here.

This episode originally aired in February 2022.

Episode Three:

Dr. Ramien moderates a discussion between the two opposing sides to highlight the research still needed to come to a consensus, while also shedding light on active research in this area.

The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions.

Episode Two: The Case for Stevens-Johnson Syndrome (SJS)

Dr. Yvonne Chiu discusses the confusion it can create when RIME is called out as a separate condition from SJS.

The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions.