My sister, Dr. Jessica Ann Pye, or “Sissy” as I liked to call her, was a modern and strong woman who did everything with confidence, creativity and ease. She was an accomplished professor, a loving mother and wife, and an excellent cook. She didn’t let small or even big things stress her out and was one of the toughest people I’ve ever known.

Unfortunately, Jess was diagnosed with Kohlmeier-Degos in November 2022. Making matters more difficult, her condition went undiagnosed for two years prior, even with regular visits to dermatologists. By the time the disease was correctly identified, her symptoms had rapidly progressed and was experiencing multiple body lesions, allergies, gluten intolerance, skin sensitivities, breathing complications, significant weight loss and GI distress.

Even after being dealt this devastating news, Jess’ first concern was for others. Upon learning of her condition, she planned to move back to Pennsylvania, to be with Mom and Dad. Not for her sake, but for theirs. While she was unable to do this due to complications with her condition, she did manage to travel to the East Coast and spend a week caring for Dad as he recovered from his own surgery.

In February 2023, Jess was connected to the team at the NIH Rare Disease department and was flown to DC for extensive testing. It was determined that she had the systemic version of the disease and unfortunately, the damage to the GI system was extensive.

They treated her with Eculizumab under a compassionate use appeal and worked extensively to find doctors in her hometown (Chandler, AZ) who could continue her ongoing treatment. Later that month, Jess was admitted to the hospital for emergency bowel surgery. She stayed in the hospital for several months struggling with a variety of complications. In the face of the doctors preparing us for the worst, through sheer strength of will and spirit, Jess persevered and rallied in the face of tremendous obstacles.

I believe the weekly infusions of Eculizumab bolstered Jessica’s system so that after many months in the hospital, Jess was able to go home and spend quality time with her husband and beloved son Ethan.

In the comfort of her own home, Jess’ strength and vibrant smile returned. We were able to have “sissy date days” and best of all, our Dad was able to visit Jess one last time in early July 2023. Her son taught us how to make Legos to give to his Mom; we celebrated her 38th birthday; reminisced over childhood videos; and together we had one last home-cooked meal as a family.

Sadly, the disease took its toll and Jessica passed Friday morning July 28, 2023 at the age of 38. We are grateful to the exceptional medical teams who tirelessly endeavored to provide the best care for Jess. We are deeply appreciative of the Degos Disease Foundation whose mission is to support and promote research toward the diagnosis, treatment, and cure of Degos Disease.

Thanks to these efforts, we were given the gift of additional time with Jess and will forever cherish those memories. My wish for the Degos community to treasure the time with their loved ones both past and present.

Jessica’s sister, Julie Kanara