One day in the morning I started to see small bumps that had arisen on my skin. I assumed that they were just some oddly shaped moles and carried on with my daily routines. But these ‘moles’ kept appearing on my hands, feet, arms and neck.
Each day I would notice a couple more on my body. Eventually these bumps completely covered my hands and arms and I couldn’t even see my skin anymore.What was weird about it was it kind of looked like bark from a tree. I looked at myself in the mirror and a mangled tree figure looks back at me. My skin became thick and hardened with a yellow-brownish color.
I have limited my interaction with the outside world at this point.Whenever I come out of my house, I feel everyone’s eyes staring at my outside shell. I don’t like the way people look at me the minute I step out of my house and I feel embarrassed of what I look like even though I know it isn’t my fault. I just want to be like everyone else! The growth had definitely gotten out of hand, it seemed to be spreading everywhere and it made me very scared to see my body basically turning into a tree so I decided to go to the dermatologist.
My dermatologist took a tissue sample for a skin biopsy which included an HPV test. He also used a probe to find nucleic acid material of viral HPV particles in the samples and researched my medical records to see my medical history. I waited in the waiting room for what seemed like ages.
I was so anxious, praying that it wasn’t cancer. That would probably be the worst news I could get. Others in the room repeatedly looked at me and I felt my face turn a shade of pink. In my head I kept hoping the doctor can find a way to make it all go away so I could be a normal teenager again.
Finally the doctor came in and beckoned us to follow him into his office. I locked eyes with him as he sat in his chair behind his desk and he looked back at me with no expression. “You have what is known as Epidermodysplasia verruciformis” he said. My jaw dropped.
Was that even english? What even is that? My confused expression was his signal to elaborate.He told me that Epidermodysplasia verruciformis (EV) is a type of skin disease that is very rare and is an immune deficiency. I asked about how I could have gotten such disease and he said it’s caused by a failed response to skin infections by HPV or human papillomavirus.
It occurs in those who have weak immune systems and cannot fight the infections. He explained further about the genes involved. He explained that it is genetic disease in which I have had two abnormal EV genes passed from my parents which are called EVER1 and EVER2 genes on chromosome 17.
Normally with unmutated EVER1 and EVER2 genes, they are a key for membrane proteins that interact with a zinc transporter protein in the intracellular structure known as keratinocytes which plays a part in having a defensive response against HPV. The doctor told me that I have a mutation in these two genes that make the keratinocytes vulnerable to HPV infections.My body isn’t able to contain the warts and the tree-like growths begin to aggressively multiply in massive amounts known as cutaneous horns. Everything was a blur I was beginning to get dizzy from all this information. I hastily asked if he can fix me but he told me that there is no actual cure for EV but there are treatments available such as use of ointments, chemical treatments with liquid nitrogen and cryotherapy in which the wart is freezed and destroyed. There is also however there is a surgical option called curettage where surgeons use a curette to take away the lesion and in the process conserve the healthy skin underneath.
The doctor said that this is a lifelong condition and that the surgery only temporarily removed the lesions and it is possible that they can recur. It will need to be monitored and managed continuously throughout my life. Having EV can increase my risk of skin cancer especially if my condition isn’t treated well such as squamous cell carcinoma and intraepidermal carcinoma.Lesions that develop into malignant tumors are not usually common but if I were to get that, it will be fatal.