It's been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.
Published On: Jan 16, 2019
Last Updated On: Sep 2, 2020
From the time I was born in July 1994, my parents knew that something was off with me. I used to be the “pink balloon” of the family, breaking out in rashes and allergic reactions frequently. Little did we know that what I had was severe eczema.
At a young age, I was diagnosed with the infamous trilogy: eczema, asthma and allergies (yes, the whole package). While none of these diseases are life threatening if managed properly, they surely affect one’s quality of life and day-to-day decisions.
I have found ways to manage my eczema, and I cannot say I am 100 percent where I want to be, but I am getting there. I once read in a magazine at a dermatologist’s office: “Don’t let eczema control your life. You have to keep living.” This quote always comes to mind when I am feeling down from a flare-up or I know my skin is not at its best.
When I graduated from college in May 2016, three friends and I decided to take a month-long trip to Europe. Although I was still managing eczema in college, it was never at the forefront of my mind because it was usually under control.
However, senior year, for whatever reason, it started to flare more consistently and severely. I went to Europe when I knew my skin was not at its best, but I could never have imagined the trip outcome when I was booking my Airbnb and flights at the time.
My skin ended up flaring badly during the first leg of the trip, which was in Iceland. I had never managed such a severe flare-up, so I was at a loss of what to do. I did not have enough steroid creams to cover my whole body.
Traveling from country to country caused my skin to get worse and worse. It was Germany where my flare-up was at its peak. I had open cuts, oozing skin and dryness on every inch of my body. I was ashamed to go out in public, but the nights were even more dreadful because I was restless from the itchiness.
When I returned home, it took months for my skin to recover and I even had to defer my job’s start date by six months. But two-and-a-half years later, I am almost healed from this experience and determined to redeem Europe in my eyes one day.
After I returned from Europe, I visited doctor after doctor and tried numerous treatments. I realized how important it is to take care of my body. Like many people in their 20s, I often took my health for granted. I finally learned to manage my eczema using steroid creams.
I recently started a biologic and hope it will bring me a better quality of life.
Despite all of my efforts for healing my skin, I think the toughest part about dealing with severe eczema is really the emotional scars. These are often unexplainable to our loved ones: the shamefulness you feel when you go out with a flare-up, waking up to itch in the middle of the night, and explaining to your friends why you have to shower and moisturize so frequently.
Sometimes I neglect to think of what eczema has done for me, meaning the positives. Being born with a disease that is “visual” has made me more empathetic and understanding with others. And from a young age, I started to find passions in volunteering, coaching, mentoring, exercising and eating right.
Yes, it’s true—eczema has created many hardships for me. But those same hardships have shaped my personality and the experiences that I seek out. I cannot control that I was born with this disease, but I can control what I takeaway from the disease.
I am now choosing to look at the bright side. One of the biggest things that I have learned over the past couple years is that “everyone has their stuff.” Sickness can often make us feel alone and like no one else has to suffer the same way as us. But this is not completely true.
Not everyone has a skin disease, but they have their own hardships to deal with. That is just life. But we’ll get through it together.