My Fight Against Mycosis Fungoides

The Beginning

Since I was about thirteen-years-old, I started getting dry circular patches on my back. I was told by my incompetent primary care doctor that it was just the way my skin was. He said the patches were nothing to worry about. I believed him and my parents did too.

Fast-forward five to six years. The two lessons had multiplied to cover my entire torso, upper arm, and neck. It was a slow progression so with each new lesion, I told myself it was the nature of my skin. I wore big shirts to cover them up and the lesions became a part of me.

Then God sent the perfect storm during my senior year of college. My dad got a new type of health insurance (a PPO plan) where I didn’t need a referral from my primary care doctor to see a specialist. I got sick with meningitis, which prompted a different doctor to suggest I see a dermatologist. Then I found out I would be kicked off my dad’s health care plan shortly after I graduated.

A couple months before I graduated, I figured I might as well see a dermatologist while I still had insurance. When the dermatologist and my mom saw the condition of my skin, I knew immediately something was wrong by the look on their faces. To this day my mother says she couldn’t believe her eyes. She had no idea it was so bad. I had gotten so used to it so I didn’t know either. Every lymph node in my body was swollen. A golf ball-sized one was removed and tested. Thankfully, it was benign. My health was shot and I had no idea. (Note to self: Don’t get used to sickness.)

I was diagnosed with mycosis fungoides. I started PUVA treatments right after I graduated and it cleared after a year. I went into remission for about two years before it came back as hyperpigmentation mycosis fungoides and the cycle of treatment and relapse has continued since. And now it’s back again!

I’m sick of it. It seems like I’ve just been putting a bandage on the problem so I’m trying a new route. I’m attacking it on the inside first. So this is my journey to see if I can make a difference in turning this disease around by starting from the inside. I’m giving myself three months to get my health together.