Storyteller: Alyssa Porier
Extraordinary Circumstance: Darier’s disease
Book: A Swimmer’s Wings (completed; needs funding)
Words by Andie Pearce
Design & Illustration by Esther Ly
Photography by Bjólan Holyoak
Edited by Jeri Larsen
ALYSSA PORIER is a 9-year-old girl, who is passionate about art, cooking, swimming, and being a good friend to others! She is currently on a swim team and has taken 2nd and 3rd place in multiple meets for her backstroke, butterfly, and breaststroke. At the age of four, Alyssa was diagnosed with Darier’s disease, a rare genetic skin disease. She has had to endure rashes, itching, and pain, as well as, multiple trials of various lotions and other medications to help her maintain and control the disease. There is currently no cure for this disease. Typically, Darier’s disease is found in 1:100,000 people, with Alyssa being one of the youngest to ever be diagnosed. As hard as it can be, sometimes, for Alyssa to deal with the effects of Darier’s, she knows that she is someone unique and special. She also enjoys being a part of groups with others, who have rare diseases, and sharing the exceptional qualities that they all have.
Read her book.
Copyright © 2019 by Dallas Graham. All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means including photocopying, recording, or information storage and retrieval without permission in writing from the copyright holder.
Darier disease, also known as Darier’s disease, Darier White disease, and keratosis follicularis, is a rare disorder that causes rough bumps, known as papules, as well as plaques on a person’s skin. While these bumps can occur throughout the body, they generally show up in oil-producing areas, like the face, neck, back, and chest. Nails may appear fragile with red and white streaks, and small pits may form in the hands and feet. Symptoms usually begin during a person’s teenage years. Severity varies between people, and changes throughout a lifetime.
The disease is caused by a mutated gene. If one parent has the mutation, there’s a 50% chance their child will too. However, not every person with this mutation will develop symptoms. Darier’s disease isn’t considered an infection, nor is it contagious.
Genetic testing and skin biopsy can help confirm a diagnosis. Right now, treatments help relieve symptoms, but can’t cure the disorder. There are different medicines available, which are either applied to the skin or taken by mouth. However, some of these treatments don’t work well for everyone, and others come with serious side effects. Dermabrasion, electrosurgery, and Mohs micrographic surgery can also help with some cases.
Learn more about Darier’s disease at these great sources:
National Organization for Rare Disorders: https://rarediseases.info.nih.gov/diseases/6243/darier-disease
Foundation for Ichthyosis and Related Skin Types: http://www.firstskinfoundation.org/content.cfm/category_id/741/page_id/544
Red Fred Project would like to thank our friends at Patient Worthy for their research and participation in sharing this very important information with us regarding this extraordinary circumstance. You can learn more about their work at patientyworthy.com.