The story of Mei Ling
My Pemphigus Challenge
My girlfriend Julie and I were out to dinner one night during the first week in October of 2001. We’d had fantastic sushi and slammed a couple sake’s…chatted and laughed…a fabulous chick’s night out!! While we were waiting for the valet to bring us our cars, I felt an itch and a tiny bump on my upper back and I asked Julie to look at it…”Does it look like a bite?” Julie answered, “Yes”, so that’s what we thought.
I went home and put some aloe with vitamin E on the bite and covered it with a small Band-Aid. The next day there were two more bites. In the ensuing weeks, I would find about 8 more bites and pretty soon the Band-Aids weren’t big enough to cover them. They grew to 3”x3” in size. I bought Teflon pads and tape, because it turned out I was allergic to adhesive as well. They didn’t look like bites anymore. They kept growing and hurting. My upper back was completely covered …raw and oozing and extremely painful. It started to look as if I had open wounds from being hit by shrapnel. Clothing hurt, a strand of my hair touching them felt like a razor blade was cutting into me so I had to cut all my hair off. I couldn’t shower because the water hitting my skin hurt. I had to gingerly position myself down on my mattress, as contact with any surface was hurtful and that took fifteen minutes. Sleeping was a challenge as was keeping any type of clothing from sticking to me and ripping my skin off. Three months of misdiagnosis and money spent on the wrong medications prompted anger, anxiety and fear. A friend suggested bed bugs: I searched the Internet and then tore my bed apart! I was afraid to go to sleep for fear that I’d be bitten to death. Talk about paranoia!!
I was seeing one of the most respected dermatologists in Beverly Hills:
Dr. David Rish. He shared offices with Dr. Arnold Klein – Michael Jackson’s doctor. You’d think these Beverly Hills doctors would know something. However since Dr. Rish was out of town from October to beginning of January, I’d only seen three of his associates who kept re-diagnosing me without success. After three months of being stymied, he finally said, “I think I know what you have.” Dr. Rish then sent me to a phlebotomist to have a blood test. Now this phlebotomist had to make a phone call to her boss because she didn’t know what she was looking for. She had never been asked to find what Dr. Rish wanted. Imagine! 30 years in her profession and she had not a clue!
Before I left the doctor’s office, he told me not to look up Pemphigus Vulgaris on the Internet, that I’d go crazy. Well I did. What I read scared the hell out of me. I shouldn’t have looked it up. Then after the shock wore off, I went back online again.
An Associate Dean of Dermatology at UCLA finally diagnosed me in February of 2002. I was also started on 100mg of prednisone. Needless to say, I got that moon face and I looked like Humpty Dumpty…not fun.
The blisters started on my back, with one in my left ear. Then my scalp got
affected. Then my gums, which scared the heck out of me as they turned white and were peeling back. Oral activity started inside my cheeks and then in the larynx. There were weeks when all I could consume was Ensure. No eating for me.
Ten years of prednisone. Nothing else as my dermatologist felt I didn’t need
to take Cellecpt or Imuran or IVIG. My case is unique. It took two years to taper from 5mg to 0mg. I have been in remission since September of 2012 and have not had an episode since.
During all those ten years, I had great support from the International Pemphigus and Pemphigoid Foundation. Without the IPPF, I would have gone batty and been depressed. Since 2012, I have been a Peer Health Coach with the IPPF and am grateful to the organization and very happy to help other newly diagnosed patients. Since I know what it is like to be in their situation, I want to give the same support that I received. It is a blessing.
Mei Ling Moore
IPPF Peer Health Coach