CNN iReport

What is the biggest obstacle you have faced (or overcome) on your road to self-confidence?

It started just like most Christmases for me. For some reason or another, I had usually been sick around Christmas from some ailment or another over a few previous years. This particular year, while on holiday break from school, I happened to be sick again. It was just before Christmas when I realized what was happening—another bout of strep throat. It was a common problem for me that I had become accustomed to over the years. I would always know when it was coming because I would get canker sores in my mouth and then about a week later I’d get strep throat.

I knew exactly what was going on when I got two canker sores about three to four days before Christmas. My mother and I scheduled an appointment with my family doctor, but sadly my regular physician (who trusted my instinct on the canker sores) was away for the holidays, so I had to see another doctor I didn’t know at all. This doctor took one look at my cancer sores, tested me for strep (which showed up negative like it always did at first) and sent me on my way. I remember being very frustrated and angry that he wouldn’t listen to me when I told him that I knew it would be strep soon. After all, I was a willful 11 year old who didn’t have a medical degree.

I was very sick that Christmas Day. I remember getting a Furby (all the rage at the time) and cuddling up with my Mom after dinner. I couldn’t get to the doctors until a few days later, when my regular doctor would be back in town. I was used to riding it out for a few days, so I made the best of my time the next day playing with my new gifts, and reading the books I had received.

I woke up on December 27, 2000 with a red, scaly rash on my elbows. I showed my mom who thought it was odd but probably just cold burn or just dry skin. Over the next two weeks, despite the fact that my strep was being treated, it spread to my hands, my knees, and my feet. It was then that my mom decided to get it checked by our family doctor. The first prognosis was psoriasis, and a set of creams to fix it. When it remained stubborn and continued to spread we were sent to a dermatologist.

Over the next few months I practically lived in that dermatologist office. Every week we tried new creams, topicals—anything that could stop the spread. At that point about 80% of my body was covered with the dry, red, flaky and thick rash, earning me the attention of my young peers in a very negative way and names like “acid hands.” I remember thinking that I could be disappointed with the turn of events or to just keep my head high and ignore the jeers. I kept my head held high.

That March, after stumping my dermatologist we decided to do a skin biopsy and send it off to the labs. The sample came from infected skin that was on one of the vertebrae of my spine. I still have the small circular scar today. That afternoon we went downtown to a panel of dermatologists who looked me over and were also stumped by the spread of the disease and the strange skin.

A few weeks later the tests were in. I had an extremely rare case of an autoimmune skin disease called pityriasis rubra pilaris, or PRP. The chance to get PRP is one in two million and it is considered a sister disease to psoriasis and also an “orphan disease,” which means that there are so few people with the disease that it has not been studied much and that there are no known cures. We joined the only support group online and started sharing stories. No one had ever heard of it coming from strep throat before. Somehow, my strep throat onset that Christmas had caused the disease.

To figure out what role strep throat had to play, we visited a throat doctor who quickly surmised that I was a carrier of strep throat and it was living in my tonsils. That April I had my tonsils removed and have never had a case of strep throat since. Little did I know that strep throat was the least of my worries.

The only few treatments available that may (or may not) help are retinoids (you would probably recognize Accutane, a name-brand retinoid commonly used to treat severe acne), immunosuppresants like methatrexate, and some topicals. Before we attempted oral medications, we tried topicals. I wrote the list down in 9^th grade of all the topicals I had tried—I remember writing about thirty different topicals down. I remember this one topical to this day—Carmol 40. It is described to “work by helping the breakdown of dead skin and pus, which helps to loosen and shed hard and scaly skin.” The cracking of skin that PRP causes (it causes your skin cells to reproduce at a rate of 10,000x faster than normal) would leave red new skin underneath cracked dead skin. When we applied Carmol 40 for the first time, I remember crying and screaming because it felt like my hands were on fire. Needless to say, that topical didn’t work either.

Eventually we finally went to retinoids. I was put on the retinoid called Accutane, of which some of the side effects are depression, nosebleeds, and severe itching. My parents actually had to go through an orientation on the depression side effect because of its severity and I had to take weekly emotional surveys online to ensure my emotional well-being. I had all of the side effects mentioned above. Throughout middle school I was severely depressed, and had mood swings often. I fought through the depression, keeping my hope in my recovery—the disease was slowly receding, and by the time I got to ninth grade it had virtually disappeared and I was taken off of Accutane for the first time in three years.

I can’t remember exactly how quickly my mood changed when off of the medicine but I knew two things: that I never wanted to take Accutane again and that I was happier than I could remember being for a long time. I had developed a reputation at school already for being a confident, open-minded, and opinionated person who wouldn’t take “crap” from anybody (so to say). I was happy with myself and my body, and even the skin that still looked red every once in a while. I thought I was free of the disease, and I hoped that it would stay that way.

In the winter of 10^th grade, my PRP came back with a vengeance. I had never had any of the autoimmune problems associated with the disease except that it seemed like I would catch every bug or virus that would spread in my high school. This winter, I was so severely fatigued that some mornings it was hard for me to even get out of bed because I would be so tired. My skin had also become inflamed again, spreading up my hands and arms, and my shins and feet. I decided, against my own better judgement, to take Accutane again. Three months later my kidneys were responding to the medicine, causing me to stop taking the medicine. I told my dermatologist to never let me take it again because I had been so depressed during the period taking it that I would have rather had the skin and autoimmune problems than the depression that Accutane caused.

Since then I have been fighting the fatigue when it surfaces every year—usually from November-February, the peak winter months in Charlotte, NC. My skin disease spreads mainly in the winter months when it is the coldest and in the summer it heals very quickly when the weather is hot. I spend the summer out on Lake Norman with my parents, soaking up the sun as much as possible, and enjoying the warmth of the humid air and the bright sun. In just a span of two months, I go back to normal. And in just a span of a few cold days of weather my skin can start to spread. We don’t know why it acts the way it does, but I plan accordingly every winter.

This has been the hardest self-confidence test I have ever faced. I was forced to grow up quickly, grow thick skin so I could ignore the jeers, and mature faster than I ever thought I would have had to. I have become very organized so that I can deal with the fatigue when it hits, and I have completely changed my diet and workout schedule so that I can try to stay healthy for as long as possible before the winter months hit and I get sick again.

I treasure the experiences that I have had because I am so happy with my life and my confidence. I like to think that I am a strong woman, with goals, fighting through the hard months so that I can enjoy every day. I have worked very hard to keep chugging through the fatigue. I’m only taking three years to get my Bachelor’s degree, which is a B.S. in Economics with an Emphasis in Business Administration, and I plan on going to law school in North Carolina and to hopefully work in Corporate Securities Law one day. I have a loving boyfriend who cares for me when I have my bad days and when I have my good days, and I’m happier than I have ever been. I like to think that I share my confidence with my close friends, who have always said that I am a strong person and that I always bring a smile to their faces. The biggest piece of advice that I can give someone is that you can’t let people make you feel bad for things you can’t control, and that you should love yourself for every strength and for every flaw. Just because you ended up a little different than the average adult doesn’t mean that you feel down on yourself. Be proud of who you are and who you want to be! Love yourself and you’ll see that happiness is just around the corner.