by Guy Norsworthy

My name is Guy Norsworthy. In August of 1997, while working in my garden in the Central Florida heat, I got a bad sunburn. Well, I grew up in Florida and I’ve had sunburns before. You deal with it for a couple of days. Your skin peels and it goes away.

After a couple of days, this sunburn was not going away. The itching was getting worse and now I was getting blisters on my back, my chest and even on my face. I went to Eckard Drug Store, bought a tube of itch cream and used it for a couple of weeks. It seemed to help with the itching but the redness and the blisters kept coming. I used peroxide. I popped blisters and the problem got worse.  

My niece was visiting from Arizona, and at her insistence, I finally agreed to go to a doctor. (See, I’m a country boy and we don’t go to doctors. I wasn’t sick. I was sunburned.) I even convinced myself I was allergic to the itch cream. I went to a GP [general practitioner] in my area who took one look and said, “ I don’t know what you’ve got but that ain’t no sunburn.” 

She referred me to a dermatologist and I got another appointment in two weeks. Okay. We are going on four weeks now and I looked like death warmed over. I was miserable. I had lesions all over, even on my feet.  My back was so dry that I could scratch and break the skin. Almost every night when I took off my shirt there would be bloodstains.  In the AM, I would find bloodstains on my sheet and pillowcase. Working was difficult and getting worse. I was driving cabs, and passengers would look at me and refuse to get in. More than one person asked me if I was HIV positive.

Finally, I got to see the dermatologist and he was stumped. We did blood tests, biopsies, you name it, and everything was negative.  About a week and a half later, the doctor finally called me to his office and told me I had pemphigus foliaceus. I couldn’t spell it, much less pronounce it. I’ll never forget (how I felt) while he was telling me how extremely rare it was and how there was no cure. I was going to die.  I have never felt so completely alone in my life.

The doctor put me on Prednisone and two types of topical creams. He, also knowing that I had no insurance, told me that if needed he would treat me free of charge. All I would have to do is pay for my prescriptions. If it wasn’t for that, I probably would be dead, for I had no one to turn to. I had a few good friends who knew I was being treated for a skin disorder but I never told anyone about the serious stuff.

I began drinking heavily (not knowing that alcohol and Prednisone don’t mix). Putting the two together is like feeding your pit bull morphine. I have always been manic-depressive. I also work in an extremely stressful environment. Being a bachelor, who had just recently ended a bad relationship, there was no one to share this load I was carrying.

The PF went into remission. I weaned off the Prednisone but in six to eight weeks it (the disease) was back. For about six months I was back on Prednisone. Friends would avoid me. Family was weary of me and work was terrible. I have worked for the same company (a small family-run company) for over 10 years. My word was no longer good enough that this was not contagious. I needed to have a note from my doctor. That really hurt my feelings and I quit working for them. Even though months later I went back to working for them, that still bothered me.

I went off the Prednisone and seemed to be free and clear. I was convinced I had beaten the odds. Then in December of ’99, I noticed a blister on my shoulder. I put some left over cream on it and went to bed. By the time I woke up the next morning, my back was covered.  I walked into the doctor’s office without an appointment and as soon as he heard I was there, he rushed me into his office. I left there on 60 mg of Prednisone and feeling totally defeated. I was alone and scared and the walls were closing in.

The next day, while having lunch with a young friend who had been going through a serious bout with depression, she said something that changed my life. She knew very little of what I was going through, and I didn’t bring it up because of my concern for her.  She was trying to let me know that she had decided her life was worthwhile, and that one of the things that changed her mind was watching a TV program on children with cancer, and how these kids, no matter what, never gave up hope and never quit trying to live.  She said “Sometimes I feel so selfish when I look at the pain in other's eyes. They have no hope of a pain free tomorrow but yet they will not quit. They will not feel sorry for themselves. They do not want pity. All they want is love and prayer.” 

And “As long as I can remember the look of hope in their eyes, I will not give up again.” She had no idea that I went to the restroom and cried, not just because I was happy that she would be ok, but I realized for the first time: I had a choice. I could sit around feeling sorry for myself, or, like her and those kids she had seen, I could fight.

I went to the library and looked up what little I could find on pemphigus. I wrote to every organization I could find from the AMA to the Center for Rare Diseases. They sent me a suggestion to call or write The National Pemphigus Foundation. You don’t know what a relief it was to find there was a NPF to write.

Meanwhile, I am taking 60 mg of Prednisone and still working 12-hour shifts, six days a week. Did I mention I take care of two elderly parents too? I got my first packet and letter from the NPF, and was for the first time aware: I was not alone. 

The mood swings have been getting worse and the depression is sometimes hard to deal with. I have experienced road rage, temper flare-ups, and just plain sulkiness. One night while looking through the NPF Quarterly, I ran across the volunteer page (Heart2Heart). I ended up calling Ann in Enterprise, Alabama.

We talked for nearly an hour. All this time, I had felt no other human could possibly know how I felt. Here was someone who not only knew what my frustrations were, but had also dealt with the same ones. She gave me some great advice and I appreciate her very much. I felt a lot better after talking to her and will be talking to her again. 

I also spoke to Lee in Tallahassee who gave me some advice and recommendations and it is so good to know there are people out there you can call when the going gets tough. I want to talk to others who have lived with PF and would also like to talk to those who are just starting their battle. We do have strength in numbers. There may be times I need someone to lean on. There may be times you need someone to lean on. As long as we all walk this road together, we can all reach the finish line. Anyone who wishes to speak to me please do so.

To reach Mr. Norsworthy, please contact the IPPF office.