In this section we reprint suggestions sent in by EPPREF members over the years - we hope you find them useful.
"When I go outside for a long period of time or for even a short period like one hour, I will wear a big sun hat, a pair of white gloves and a long-sleeved white shirt. Even in the summer when we swim my mother coaxes us to wear the hat, gloves and shirt into the water. It may seem very embarrassing to go around with all your friends, when they walk around wearing halters and shorts, but it keeps you from going through the agony that you get afterwards." -- Connie Truitt (written when she was an EPP Kid).
"The visible signs of EPP (swelling, reddening) rarely occurred at the time of exposure. Pain, though, was instant and constant. My pale complexion contradicted the burning bee-stinging punishment the sun caused, making it impossible to convince anyone that I hurt. If they listened at all, they countered with stories of cousins, in-laws, friends, etc., who were fair-skinned, freckled or burned easily. They never heard me tell them I couldn't stay in the sun long enough to cross the street, never mind get sunburned. And, they nodded patronizingly when I told them that coverings of any kind were useless against the brutal rays of the sun. They didn't understand that even while sitting in the shade, bouncing rays tortured my tender nose and tormented delicate ears. It became apparent that more sympathy went to the overdone sunworshipper who, for cosmetic adornment, deliberately roasted his/her skin to a painful scarlet. I quit apologizing for the hurt I couldn't explain and stopped mentioning this "imaginary affliction". Instead, I invented ruses for removing myself from the hated sunlight. I learned it was easier to endure class picnics by running from tree to tree or taking extended toilet breaks. (Even outhouses were mercifully dark and cool.) I submitted to annual office outings by arriving late and hanging around the shaded food table. Hovering over the potato salad killed time till the sun finally went down. Then, like a moth emerging from its cocoon, I'd join the revelers by twilight, moonlight and lantern light. This shut-my-mouth-and-live-with-it pretense caused me to choose as my personal banner the words of Logan Pearsall Smith (American literateur) - 'Thank Heavens the sun has gone in, and I don't have to go out and enjoy it'." -- Mrs. Elizabeth McNeill.
Work outside can be tough on the hands. You can make "mitts" out of gloves by cutting the tips of the fingers off so that your first knuckle is exposed. Actually, mitts are sold in some stores, as fashion items! Also, Playtex gloves, sold in drugstores in various thicknesses (from surgical to heavy duty cleaning) were found helpful.
The American Porphyria Foundation has put out a pamphlet called "Diet and Nutrition in Porphyria", which you might fmd useful. Although it is meant mainly for people with liver-based porphyrias (although EPP people can get liver problems, EPP itself is a bone-marrow-based porphyria), there is a section on nutrition in other kinds of porphyria, including EPP. It also has a section on general nutrition tips, which can be of help to everyone. The APF also publishes a nice brochure on EPP, which might be useful to have, to show to school teachers, employers, etc. The APF will be happy to send you copies of these brochures - write to:
- The American Porphyria Foundation
- P.O. Box 22712
- Houston, TX 77227
EPP people should also join the APF. They are an umbrella group for all porphyrias, and do lobbying, which EPPREF does not do. Their dues are tax-deductible. The advantage of having a support group for all the porphyrias is that it increases our numbers, and the bigger the number, the more government officials and insurance companies will pay attention to us!
An EPPREF member writes that she finds that applying Vaseline Intensive Care lotion to sun-exposed skin relieves the pain associated with exposure.
A member who competes in bicycle races mentioned that he wears a ski mask while racing, but that it is pretty hot. The City Sports store near the EPPREF headquarters sells a mask called 'Field Sensor' made by a company called Pearl Izumi. It covers your face from the nose down, and is made for sports wear. A company called Seirus makes a neoprene ski mask, but this may also be a bit hot for summertime use. If anyone has found good, cool face protection suitable for use while playing sports, let us know and we'll pass it along in the next issue of EPPREF NEWS.
A member has informed us that Disneyland is responsive to people with sun sensitivity - if you go to "City Hall' and explain your problem, or, better yet, call 714-999-4565 ahead of your visit, they will get you a special pass which will enable you to get into attractions without waiting on line (which usually means standing out in the sun!). This can also be done at Disney World in Orlando - there, go to the "Guest Relations" office at any of their parks (Magic Kingdom, EPCOT, etc.) and request the Special Assistance Pass. We would also suggest bringing some documentation that you have EPP, as your disability is not visible, and people on duty may not be familiar with light-sensitivity and its consequences.
As we mentioned above in the article on Lumitene, EPPREF will be happy to provide a letter for you signed by Dr. Mathews-Roth, EPPREFs medical director, explaining EPP and stressing the need for protection from light, and the need to take beta-carotene. Do not hesitate to ask for a copy.
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IN TOUCH
In "In Touch" we list people who want pen pals. We divide requests into 3 age groups - kids, adults and seniors. So, if you want a pen pal, send us your name and address and age, so we can list you in the proper group.
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TRAVEL TIPS FOR EPP PEOPLE
Are you thinking that great vacation spots may be out for EPP sufferers? Think again! EPPREF member Lou Brink has put together the following tips.
"Summertime and thoughts turn to vacation pleasures for most, but for those with the sun-sensitive porphyrias it's an endless search for the elusive treasures known as shade and participation. Shade for the outdoor activities that vacations imply and the ability to participate in activities with other people - to socialize.
"As we travel around we occasionally find a spot that serves our needs quite well and often friends and relatives will tell us of places they think will help solve our problem. No one with EPP expects to spend a full day at the beach or ride the rapids or take a five day horseback trek through the West. But we can try for maximum pleasure, having already learned to settle for less than one hundred percent. Perhaps it would be helpful to share some information regarding vacation resorts. As an example, I would cite a couple of places that provided vacation pleasures for me.
"MAINE. The Hillcrest Inn Resort, P.O. Box 2000, Shore Road, Ogunquit, ME 03907. Ask for an apartment on the front of the Inn building. It has large porches or balconies which are shaded by noon. There's an indoor pool and trolly car or auto transportation to the beach a mile away. There's a covered bench area at the beach for ocean watching, and a fair number of overcast days for a walk on three miles of beautiful sand or a swim for the hardy souls. The town of Ogunquit has a summer theater, movies, lots of good restaurants and the famous Perkins Cove for evening wandering through its interesting shops.
"FLORIDA. The Sea Lord, 2315 South Ocean Blvd., Palm Beach, FL 33480. A small oceanfront hotel several miles south of the city. Request oceanfront apartment or room. There's a large lawn and beach, both shady by mid to late aftemoon. Also, a courtyard pool with some shade. And Palm Beach has blocks and blocks of shade for window shopping.
"HAWAII. Hanalei Colony Resort at Princeville on Kauai. Many apartments facing Hanalei Bay and some shade on balconies and at pools. Kauai is known as the garden isle because of the amounts of rainfall and it is possible to meander down small country lanes and find a number of small beaches with lots of shade.
"Other amenities that would add to our pleasure could be lighted or indoor tennis courts, game or card rooms, dancing, etc. It's also important not only to name the resort, but the location of the room/apartment, or even an exact room number. Any additional suggestions would be welcome. HAPPPY VACATION!!"
If you have any favorite vacation spots, send a description of them to EPPREF and we'll list them in the next issue of the EPPREF NEWS. -- Ed.
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SOME PATIENTS' QUESTIONS ABOUT EPP
This is a collection of questions which individual patients have asked in letters to EPPREF. We thought they might be of interest to all members. Don't ever hesitate to write or call EPPREF if you ever have any questions about EPP.
1) "Does the pain cause all or some EPP people to feel out of control or out of their minds?" Yes, it certainly can. And this is not peculiar to EPP - any severe pain can do this, when it cannot be controlled. Be assured you are not losing your minds! A German physician in 1913 injected himself with hematoporphyrin (closely related in chemical structure to protoporphyrin, which accumulates in EPP) and in addition to his severe photosensitivity, he developed psychological symptoms such as fear. These disappeared when his photosensitivity did.
2) "Does exposure to the sun cause a chemical imbalance or change in the brain?" Years ago there was a suggestion that tropical sunlight caused psychological effects, but this was never proved. In one of the liver-based porphyrias, acute intermittent porphyria, there are mental problems associated with the condition. (Please remember that EPP does not ever develop into this condition, or into any of the other porphyrias.) There is no evidence that protoporphyrin has any effects on the brain.
3) "Do other EPP People have stomach aches and chills after exposure to the sun?" Yes, this has been reported.
4) "Does an elevated urine ketone level or blood in the urine have any connection to EPP?" Changes in the urine have never been reported in EPP. Many other diseases can cause these findings, so it is necessary to see a doctor to try and find the cause for this. If it persists, especially the blood, it might be a good idea to have a cystoscopy (an examination of the inside of the bladder).
5) "Does climate have any bearing on how the body uses porphyrins?" Climate has no effect on how the body forms or uses the porphyrins, but it does have an effect on what happens to the porphyrins. The sunnier the climate the more porphyrins can form the chemical species that give rise to the skin symptoms of EPP. It is important to remember that sunlight can get through your skin to the capillaries and other small blood vessels that are underneath it, to react with the porphyrins which spill into your blood plasma. So, wearing protective clothes helps, and so does developing a suntan, and taking Lumitene.
6) "Has any other EPP person been left with disfigured fingernails from the often swelling fingers?" Yes - this is common - and has been reported in medical journals.
7) "Do all EPP people take a very long time to heal from the smallest cut or scratch and do they scar from this as well?" Healing which takes somewhat longer than in people without EPP is common, especially in skin areas which are exposed to light. If you have prolonged healing time and scar formation in parts of your body which are never exposed to light, you may want to consult your dermatologist.
8) "Do other EPP people suffer from any type of light or light bulb as I do?" Problems with fluorescent lights are common. As to regular (incandescent) bulbs, we have not heard of any, but companies may be changing the filaments and thus varying output. If you have found this effect from incandescent bulbs happening recently, say only in the last several years, please let EPPREF know and we will make some calls to lamp manufacturers to see what is going on. If fluorescent lights bother you, you can get fluorescent tubes with the "incandescent" light output spectrum - these tubes should not cause your photosensitivity problems.
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