Helping the Maxwell family live with a rare chronic disorder
Two dermatologists work together to help a patient and her children navigate insurance hurdles to access the treatments they need to treat pityriasis rubra pilaris, a rare auto-immune disorder.
I was born with pityriasis rubra pilaris, an auto-immune disorder where my skin grows too fast for me to shed it, which leads to internal infections and painful cracking and bleeding. At the beginning, it’s similar to a mild sunburn, but it progressively gets worse. It’s a lifetime condition for myself and my kids.
I’ve been seeing Dr. Jack Lesher of Georgia Health Sciences Medical Center in Augusta since I was hospitalized for 33 days when I was 12, and he’s really helped me over the years. I now use an injectable treatment that keeps my condition under control.
The patient's perspective
This video is narrated by Virginia Maxwell of Lexington, South Carolina. She and her sons have pityriasis rubra pilaris.
When my twin sons were 4 weeks old, I could tell from their hands that they were developing the disorder, too. Last year, my son Nathaniel was denied the medications he needed. Because it’s such a rare disorder, insurance companies haven’t approved anything specifically for pityriasis rubra pilaris, and they were requiring him to try a rheumatoid arthritis treatment before they would cover the injectable treatment I use and know works.
Dr. Lesher and his resident at the time, Dr. Jessica Burgy of Columbia Dermatology, helped me understand more about the process and what we could do to expedite approval for the injectable drug. It was a tough year trying to get Nathaniel approved for the treatment, but it was tremendous having the support of Dr. Burgy. She has not only helped me as a patient, but as a mother. She’s always going to be there to help me with any of the issues the kids have as well as myself.
The dermatologist's perspective
“As a resident, I worked closely with Dr. Lesher to help Virginia and her family access the medications they needed to treat their rare condition. Today, I’m honored to be able to continue to help her and her family receive the care they need through my practice. ”
─ Jessica Burgy, MD Columbia Dermatology