EPP Patient’s Portrait Chosen for ‘Beyond the Diagnosis’ Art Exhibit
A portrait of Morgan McKillop, a pre-teen who has erythropoietic protoporphyria (EPP) and is an active member of the American Porphyria Foundation (APF), has been chosen to be a part of an art gallery of faces representing rare diseases.
McKillop’s image, which is done in muted tones and is described by the APF in its announcement as symbolizing life in the shadows, will be featured among more than 100 other portraits in the “Beyond the Diagnosis” art exhibit, which focuses on the orphan diseases patient community.
Through artists’ volunteer work, the goal of the “Beyond the Diagnosis” exhibit is to put a face to the roughly 7,000 orphan disorders — rare diseases, including porphyria, that affect a small percentage of the population — currently documented worldwide.
The exhibit travels globally to medical schools, research institutes, and hospitals. The idea is to get the medical community and others to look beyond a patient’s diagnosis to the person.
“Beyond the Diagnosis” is seeking to unite art and science to raise awareness, promote research, and support the development of innovative treatments for people with rare and underserved conditions. Funding to support the art comes from donations.
“Art has been used for thousands of years to successfully convey a message, whether it be a story or a glimpse into the human spirit,” states the exhibit’s webpage. “At Beyond the Diagnosis, we believe art not only leaves a powerful and lasting visual imprint but creates a unique connection for the viewer.”
McKillop, whose portrait is now also part of the gallery, has been an active member of the porphyria community. She was just 9 when she held her first annual “Morgan’s Fun Run From the Sun” to raise money to battle EPP, a type of cutaneous porphyria that affects the skin. The second annual fun run, in April 2020, raised more than $2,400 according to her GoFundMe page.
One of EPP’s main symptoms is severe pain from sunlight exposure. Because children with EPP need to shield themselves from direct sun, they often miss certain activities, including playing outside.
On her fundraising page, McKillop describes the pain from her condition as “feeling like someone is pouring hot lava on my skin.” The youngster, who enjoys dancing, singing, acting, sports, and hanging out with friends, was about 18 months old when her parents realized that there was something amiss. She was diagnosed within a year — “which is quick for rare diseases!” her page noted.
After years of trying to manage sunlight exposure, McKillop’s parents discovered Camp Sundown for children with EPP and similar disorders. From there, the family became acquainted with the APF, which advocates for porphyria patients and their families.
In 2019, McKillop became an AFP Find Your Shadow program winner and was treated, with her family, to a guided trip to Disney World in Florida. The program is part of Shadow Jumpers, a page created to give youths with EPP and their families a venue for learning about the disease, which affects fewer than 1,000 U.S. residents. It also offers management tips and an opportunity to hear from fellow patients.
Shadow Jumpers’ three-year-old adventure program aims to help children with EPP attempt new things they would not otherwise do because of their condition. Adventures may include attending a camp, playing an outdoor sport, or going on a family vacation. In 2019, the winners — including the McKillops, of Blue Point, New York — were treated to the Disney trips that were as sun-proofed as possible.
The program is open to families with EPP children ages 5–17. Part of the application asks candidates why their family should be chosen. The applications are then reviewed by Shadow Jumpers and the APF. Applications for this year’s Find Your Shadow program may be submitted until April 30.