Racquel never once complained of any pain

by Debbie McKinney 

My daughter Racquel began suffering from PV June 3, 1996, this is a day I will always remember just as if it were the day she was born. At this time Racquel was a beautiful innocent 7 year old girl with nothing on her mind but what would she play with next. The first signs of her PV was in her eyes but she was not diagnosed with PV at this time. Her Pediatrician initially thought she had Pink Eye and that is what she was treated for, after 4 days of treatment and her eyes did not improve we went back to the doctor and she referred us to an eye specialist who thought she had a bug in her eye because of the way it was blistered.

Well, needless to say there was not a bug in her eye and so we were given more eye drops and told if not better in 4 days to bring her to this Child eye specialist. Of course, the eyes did not improve so we went to the Child Eye Specialist as recommended and he was baffled. At this office they poked and prodded her eyes and still could not figure out what was wrong and again we were given medication to treat the problem.

After about 2 months of seeing him he decided to put her on a low dose of prednisone due to the inflammation in her eyes. Shortly after taking the prednisone her eyes began to clear but the doctor did not want to keep her on the prednisone because he still did not know what he was treating, and by this time it was also time for school to start.

This was the most hardest time of her life you see because she was in school and being called names like "red eye monster", "the girl with bloody eyes". It was soon after school started that Racquel began to have lesions in her mouth along with a foul odor. We saw many doctors ranging from the pediatrician, immunologist and oncologist and pulmonologist. It was the pulmonary doctor who finally recommended to have a bronchonscopy done which we did.

Racquel never once complained of any pain during this entire 6-month period. By this time Racquel had lost weight because she could not eat and she had began to vomit blood. Upon the completion of this bronchonscopy it revealed that she had lesions all on her vocal cords, straight down to her esophagus, but nothing in the stomach. Even after this, the doctors still had no idea what she had.

Racquel continued to suffer until May 1997, when the doctors decided to do a biopsy of her lesions, and this is when we found out what she had, Pemphigus Vulgaris. Of course, we had no idea what it was and there was not much literature on this disease, and what we did find basically said she was going to die. For an entire year my daughter saw me cry before she was diagnosed and now that we know what she has how can I stop the crying to help her understand?

I had just gotten my computer and barely knew how to use it, but I was able to find the National Pemphigus Foundation, and this is when we as a family begin to better understand this disease.

Racquel has been lucky in a sense because she had skin lesions only once and it was on her hand, but we were able to cover them while she was in school. Those scars have healed, and we thank god every day for allowing those scars to disappear.

My daughter is now a beautiful 11 year old living with PV. She has been on her share of prednisone, both orally and infusion and she has taken other medications such as dapsone, plaquenil and methotrexate. The prednisone stole my child's liveliness, and it is just now that I can see she is beginning to enjoy her life.

The past year and a half she has been medication free, and we continue to pray and hope that she is able to say medication free.