Suntan finally possible after 14 years of night

For the first summer in her life, 14-year-old Morgan McKillop was able to get a suntan.

Morgan has a condition called erythropoietic protoporphyria (EPP) whose major symptom is severe pain after exposure to sunlight, while some with EPP can even be sensitive to certain artificial light. Symptoms may start with tingling, itching, or burning of the exposed skin.

Recently, the United Porphyrias Association aided Morgan in enrolling in a trial pharmaceutical program to treat her condition and the results were life-changing.

“I’m so grateful to the UPA for giving me the opportunity to be on this drug trial and providing me the chance to do things I was never able to do before. I’m grateful to my dad, who grows the garden in our backyard so we can raise money for the UPA,” said Morgan.

EPP patients are advised to avoid sunlight and wear sun-protective clothing, such as long sleeves, hats and gloves.

For those with (EPP), typical day activities like bike riding, going to the beach, and playing outdoor sports cannot be enjoyed.

A rare genetic disorder, EPP is caused by the deficiency of the enzyme ferrochelatase, which is essential for the production of hemoglobin. As a result of the lack of this enzyme, there is an abnormal accumulation of protoporphyrin in the bone marrow, plasma, and red blood cells.

These phototoxic reactions are generally not responsive to pain medications and antihistamines and are usually treated with fans, cold washcloths, and hot showers.

Morgan was diagnosed with (EPP) at the age of 2 and half after going to a pediatric dermatologist when general practitioners and allergists failed to diagnose her issues, which resulted in severe swelling and an unsettling puffiness in her face and body.

The early diagnosis did help in that Morgan was able to grow up already accommodating her special needs as someone with EPP. Morgan’s parents guided her towards indoor sports like volleyball, basketball and gymnastics, where she excelled.

In previous years, Morgan attended a specialized sleepaway camp called Camp Sundown, where other children afflicted with porphyria diseases are able to enjoy the summer experience, with an indoor pool and an adjusted schedule that seeks to invert the standard day with midnight swims and waking up at noon to maximize the time without the full sun.

The McKillop family has found solace and support with the United Porphyrias Association (UPA) and have given back to the organization for the past three years with money raised from their farmstand, which father Ben tends with Morgan in the evening hours to accommodate her EPP.

This year, with an active and bountiful vegetable farm on their property, the McKillops, who often give away their produce, raised over $1,000.

“Growing the vegetables and donating all the proceeds to the United Porphyrias Association has been even more fulfilling this year! Morgan started on a drug trial back in January, and if it weren’t for the United Porphyrias Association it wouldn’t have been possible. Knowing that our little vegetable garden can help people like Morgan (who have all types of Porphyria), we feel like we can really help make a difference,” said mom, Colleen.

To make a donation to the UPA, please visit www.porphyria.org.