FOR SUPPORT, CALL 1-866-APF-3635 (273-3635)
Camp Sundown is a camp that was created for kids with photosensitive conditions. It is held each summer. See www.xps.org for more information and for registration information.
Camp Discovery provides a week-long summer camping experience of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun for young people with skin disorders. It is sponsored by the American Academy of Dermatology. Full scholarships, including transportation, are provided by the American Academy of Dermatology through generous donations of their members and other organizations. Members of the Academy are asked to recommend candidates for Camp Discovery, so ask your child's doctor about sending your child to Camp Discovery. https://www.aad.org/public/kids/camp-discovery
Planning a trip to Disneyland? Go to "Town Hall" and explain your condition with photosensitivity. You should bring a physician's letter with you as well as an APF brochure explaining the type of Porphyria you have. The staff will ask you some questions about your limitations (e.g., whether or not you can climb stairs) and how many are in your group. Next time you return, be sure to bring the old card with you, as it will only take about half as long to go through the process on your next trip. https://disneyland.disney.go.com/guest-services/info-center-guest-relations/
Planning a trip to Disney World? Proceed to the "Guest Relations" office at any park (Magic Kingdom, EPCOT, etc.) and request the Special Assistance Pass. Remember to bring a doctor's note and explanation of your condition, because it is not necessarily visible. People on duty may not be familiar with light sensitivity and its consequences. https://disneyworld.disney.go.com/guest-services/guest-relations/
There are many companies that offer sun protective clothing for both youth and adults. Please see Tips and Tricks for great ideas. Coolibar and Sun Precautions are companies to visit for clothing options.
Please contact us at general@porphyriafoundation.org with any questions or additional resources.
