With raging sun the last few weeks of summer, many enjoyed basking in the light before school starts, but for those with erythropoietic protoporphyria (EPP), typical day activities like bike riding, going to the beach, and playing outdoor sports cannot be enjoyed.
To raise funds for an EPP organization, The United Porphyrias Association, Morgan McKillop and her family decided to once again sell their produce from their evening-tended mini-farm.
The United Porphyrias Association is “committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias,” and have a vision for “a world where patients are free from the pain and challenges of porphyria.”
“The UPA is working to support quicker diagnosis, better management, and access to treatment for the porphyria community. We feel supported knowing that UPA is working every day to help improve the quality of life for patients with porphyria,” said Morgan’s mother, Colleen.
Hosting a farm exchange this past Saturday, Aug. 13, the McKillops hope to raise as much or close to the $600 they collected last year.
The farm stand offers cucumbers (pickling and regular), green peppers (bell, jalapeno, snacking), tomatoes (grape, cherry and few other random), acorn squash, zucchini, and from a neighbor, carrots, summer squashes, and potatoes.
Morgan and her father, Ben, have grown closer by tending to their mini-farm as they cultivate and care for their crops in the early evening, when the sun is at a lower intensity and more bearable for Morgan.
EPP is a rare genetic disorder 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.
The major symptom of EPP 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.
These phototoxic reactions are generally not responsive to pain medications and antihistamines and are usually treated with fans, cold washcloths, and hot showers.
EPP patients are advised to avoid sunlight and wear sun-protective clothing, such as long sleeves, hats and gloves.
Thirteen-year-old 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.
“She looked like a Cabbage Patch Kid, with puffy skin and sunken eyes,” said mother, Colleen McKillop.
The early diagnosis did help in that Morgan was able to grow up accommodating her special needs as someone with EPP. Morgan’s parents guided her towards indoor sports like volleyball, basketball and gymnastics, where she excelled.
To make a donation, please visit: https://www.porphyria.org/.
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