INFO for PMLE patients

Hello everyone,

I have suffered from PMLE from hairline to toenails since 1995. The only year besides 1995 that I had a sun reaction was 2003.

I am under the care of one of the BEST DERMATOLOGISTS in NORTH AMERICA if not the world. After my initial outbread in 1995 where I had NO idea what was happening to me I saw Doctor Wayne Gulliver. He told me what I had, and though it was itchy, painful and ugly, it would not kill me. AND he could help me. At that time NOTHING I had tried worked except heavy clothing. Sunscreens were useless to prevent it.

The following January I started Photolight therapy for the wavelength of light I am allergic to. I start at 5 seconds (short I know) and am increased everyday by 5%. I go for photolight therapy EVERY YEAR from January to the end of May, early June (inconvenient I know).

Once I am discharged in May, I can use a 30 SPF on all exposed skin without too much problem. I have to be careful to reapply often in the first few weeks of exposure but after that, normal applications of sunscreen are fine.

I live in Newfoundland, Canada so many may say that the weather is not so great here. But I have been in Utah and Arizona in over 100 degree temps with full sun, and Florida and Georgia with high humidity and sun with no problems from PMLE.

This may not work for everyone but it's good to know there are options out there.

I am going down south in April next year so I will start my treatments earlier.

If you have any questions regarding Dr. Gulliver please let me know. He is a fantastic doctor and is frequently out of the country to give talks and seminars on his research in PMLE and psorisis.

Thanks for reading,
JoAnn