Meet Rachael Wrobel

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Name: Rachael Wrobel

Age: 29

Occupation: Community support staff for adults with intellectual disabilities

Location: Michigan

Skin condition: Epidermolysis Bullosa


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

I was born with a rare skin condition that makes my skin more sensitive than others.

What are you up to in life right now?

I'm attempting to find a balance between professional, personal and medical life. I participated in a medical trial at the beginning of the year. This summer has been a struggle with medical issues but I take advantage of good days to do something fun.

So you've been shuttling back and forth to Stanford for clinical trials, in addition holding down your job and managing your healthcare. That's A LOT. Why do you take on so much, and how do you manage it all?

The clinical trial was an opportunity to help advance future treatments for those with EB or other skin conditions. I also regularly try to do something to push myself out of my comfort zone, which it did. It required a lot of communication skills to keep everything organized, but I took it one day at a time. I also realized that it's ok to say "no" to people and I'm my biggest advocate.

Last year we worked together when I profiled you for Jezebel. And something I really admire about you is that you're so strident about people with EB developing the skills they need to live independently as adults.  Tell me more about that. 

EB used to be considered a "childhood disorder" but with advancement in bandages and new developing treatments more children are becoming adults. I believe there is no reason someone with EB can't strive for their own independence. It might look different for each person (home nursing care, roommate, guest house behind their parents’ place) but it's an important part of life development to achieve a sense of independence.

You've been navigating the world of online dating. As a woman with a disability, what is that like? How do you handle telling people about your skin?

It's been quite interesting to say the least. It provides an escape and an opportunity to get to know someone new. A physical disability is hard to ignore though I've found that some will completely avoid it like household chores. I chose to enjoy the social interaction and usually don't expect to hear from them again. For those that do ask, I keep my explanation pretty basic unless they're really interested. I haven't figured out if telling them before meeting is a better option, but it definitely keeps things interesting.

Where can we keep up with you?

Best place is on Facebook though I don't share a lot about my medical issues for personal reasons. I also have a blog but I haven't updated it recently...

https://rachaelanneweb.wordpress.com/

Sarah Harris