Meet Margaret Frost


Name: Margaret Frost

Age: 31

Occupation: Elementary Music Teacher

Location: Fairfax County, Virginia

Skin Condition: Netherton Syndrome, a form of Ichthyosis

I feel like people with skin conditions often have a one-line explanation that they use to explain their skin to others. Tell us yours. 

I say “It’s a skin condition I was born with.” I prefer not to use the term “disease” because I feel like it connotes a contagious disease. I also feel  like the term “skin condition” is more positive.

What are you up to in life right now? 

I have two jobs; I teach K-6 general music and chorus for Fairfax County Public Schools, and I work as the children’s music director at my home church. I am also working earning my Kodaly certification. Zoltan Kodaly was a Hungarian music educator and composer, and being a Kodaly certified music teacher means that I understand Kodaly’s approach to teaching music and how to implement it in my classroom. I have two cats, and I am also in a new relationship!

New relationships are so fun! I'd love to hear more about your experience datingI think it can be tricky, figuring out how to talk about our skin with potential romantic partners, deciding whether or not to disclose it on apps, that sort of thing. And then whoever we’re with has to get used to the lived realities of our skin.

My boyfriend and I met online; I mentioned my skin condition in my profile because my ichthyosis is so visible in pictures and in person, I preferred to address the elephant in the room from the start. My bigger concern was that about a month after my boyfriend and I started dating, I was diagnosed with skin cancer (not melanoma) and I was really nervous about telling him. After I told him, he took my hand and said that he is here to support me and be there for me. 

I haven’t figured out how to handle my skin romantically yet, nor have I lived with a significant other, so the daily realities of my skin condition have probably not been realized by people other than family members and my college roommates. I am still trying to figure out how to navigate those waters!

Re: skin cancer. I was diagnosed with squamous cell skin cancer in two places on my neck at the end of March. Unlike melanoma, squamous cell carcinoma does not spread to other organs of the body. I have already had it surgically removed, and I am planning to have my dermatologist biopsy one more spot on my neck. I am fortunate to live about an hour away from NIH (National Institutes of Health) where they will be able to biopsy some non-cancerous skin and draw blood and hopefully find the cause of the cancer.

I think, especially when we're young, that the arts can give us a way to transcend our bodiesto see and live beyond whatever's happening with our skin. Tell us about your love of music. Did it give you that sort of transcendence? What is the relationship between your musicality and your skin?

My love of music started at a young age. I grew up in a musical family; my siblings sang at church and took piano lessons, as did I. Music was something I was always good at, and it was something I could do without risk of overheating, since I don’t sweat. I think music did give me that transcendence, particularly when performing in a choral ensemble. Being part of something bigger than myself and creating something that everyone can enjoy is an incredible feeling. Music typically gives me the chance to escape and forget about my skin, particularly in the rehearsal setting. Music has also helped my self-confidence, through performing in piano and voice recitals and continuing to take private voice lessons today. 

Being a teacher is a super public job, and Netherton Syndrome is a visible condition. How do you handle it when kidsand colleaguesask about your skin? I imagine your days are pretty full, too. What do you do to care for your skin throughout the work day?

I struggled with this as a student teacher, and as a young teacher. I remember feeling very self conscious of my skin when I needed to hold a student’s hand while student teaching. I also got frustrated when students would ask about my skin. Now, with younger students, I tell them I was born this way, just like some people have brown hair and some people have blond hair. This seems to make sense to them.

My days are definitely full—there are three times a week where I teach for 3 hours straight with no break. I keep a small jar of lotion in my classroom, and I reapply it during restroom breaks. Sometimes I put a bit on my lips while I’m teaching, and I’ve been surprised by the number of students who recognize the jar and say that they use it as well.

Ok, this isn't skin-related, but I realize that, as an adult, I sing a lot less than I did when I was involved in more organized musical activities as a kid. What's your top advice for bringing music into our daily lives?

I think singing along with the radio in the car is probably the easiest (and least expensive) way to keep up your musical chops. If people are interested in performing with a group, there are many community bands, orchestras, and choirs. Local high schools often have ensemble performances as well as musical theater productions.

Where can we keep up with you?

I am on Facebook :). 

Sarah Harris