Meet Melissa Muehlbauer
Name: Melissa Muehlbauer
Age: 30
Occupation: Sign Language Interpreter
Location: Sioux Falls, SD
Skin Condition: Ehlers Danlos Syndrome-Classic or Type I/II
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.
The easiest way I can explain it is my skin is like tissue paper. Everyone else has copier paper skin. It tears and bruises extremely easy. It's also very stretchy. My body doesn't process collagen correctly.
What are you up to in life right now?
Right now I feel like a typical person of my generation. Still trying to figure out life and how to be an adult. Trying to become somewhat adequate at my profession. My fiance and I just bought a house last fall and so we have so much we want to do to the house but trying to figure out how to accomplish everything.
So we've known each other since we were 10 and we both went to the American Academy of Dermatology's summer camp for kids with skin conditions. And I remember you came up to me, and you were so nice and chatty, and you were wearing these elbow and knee pads to protect the skin at your joints. I don't imagine you're still wearing roller skating gear all the time, but I'm curious how you protect your skin these days.
Growing up I was quite the little experiment. My disorder is fairly rare so everything was trial and error. It's a recessive gene that was passed on from my mother. The story goes that I got injured at my 2nd birthday party and since I'm the 3rd child my parents knew that what happened wasn't normal. Eventually somehow I got tested and they figured it out. They ended up testing my immediate family which led to my mother's 12 siblings and her parents getting tested as well. They found the genetic marker in all of my aunts, uncles, and my grandfather. At the time that was the largest family testing at the University of Minnesota. But out of my 43ish cousins I'm the only one with my disorder. Luckily, my niece and nephews haven't showed signs of having it. Anywho, my poor parents would have put me in a bubble if they could've. But the best they could do was arm me with biking pads and a karate helmet for when I was at school for gym and recess. As I got older and less gangly I stopped wearing the pads but would wrap my knees in ace bandages just for some extra padding if I knocked my knees on things during school. I would say I stopped wearing those around 14-15 years old. Since then it's just been needing to be hyper aware of my surroundings. I get very anxious when I'm in a crowd of people. I walk like a penguin during the winter to hopefully not slip on the ice. During college I needed a disabled parking pass so I could park close to the buildings and not have to walk across the ice rink that was the campus. When I was younger I'd go months between getting stitches and now I go years.
Another fun part is it's not just a skin disorder, it's also a joint disorder. My joints are a lot more loose than an average person's. When I was younger my knees would dislocate so often the doctor finally just told me how to properly put it back myself. My skin disorder will keep me looking young, but I already have the joints of an old lady.
You have a zillion adorable animals. Tell us about your menagerie. Does caring for them impact your skin?
Yes I've slowly acquired quite the little pack. I have 4 cats and 2 dogs. It can be a struggle with them. With my first cat I was contemplating getting her declawed because I couldn't imagine having a cat clawing me often. But after doing research I just couldn't do that to her. So yes she got me a few times but I trained her to not her use claws with me and the rest of my cats I got as kittens and they would always learn from the older ones and I honestly haven't had too many injuries from them. The dogs I feel are harder to manage. They're a bit bigger so they have more weight to throw around and are a lot crazier. My older one has been trained to not jump very much but my younger we're still working on it. It's been harder to train them because I can't always correct them properly because I'm worried about getting injured. I believe if it wasn't for my disorder I'd have a job that would somehow involve animals more one on one but I never could pursue such a career.
I also think I have so many animals because as much as I want kids I don't know if we'll ever get there. Physically I can't carry a child but also I don't want to pass on my disorder. I want my kids to be able to run around and play with other kids and play sports like I couldn't. We're talking about adopting eventually but then I wonder about if I physically can take care of a child. When they're little they grab everything and are wild and I don't know if my body could go through that. We'll see.
You've gotten a number of tattoos. Can you describe them? It strikes me that getting tattoos is a way to re-assert control over your skin - it becomes a tool for visually stating your identity, and not just an organ that doesn't work as well as it should. I'd love your thoughts on that.
You think so much deeper than I do! I got tattoos just because I grew up an alternative kid in high school and I just love tattoos. I did quite a bit of research before I got my first one at 18. Facebook just started their group function and I was in an EDS group and there were quite a few people with my type who got tattoos so I decided to try it. My first one was a Harry Potter tattoo because I'm kinda nerdy. It's about 2 inches in diameter. It turned out just fine. Healed normally and everything. My next one was a B&W portrait of my uncle who passed away from suicide on my upper back/shoulder. That was a 3 1/2 hour tattoo. Afterwards the artist said how sore his hand was because he had to work so much harder keep my skin taut compared to an average person. Lastly I got a tattoo of a pink elephant with purple wings and the words Camp Discovery underneath. Camp has truly been a second home for me and honestly exactly what I needed at a crucial time in my life to teach me I'm not alone out there and not the only kid with skin problems who feels left out. I do have other tattoos I plan on getting!
Where can we keep up with you?
Honestly I'm a pretty boring person who doesn't do much on social media but you can follow my cute pets on Instagram @meows.and.mutts. And you can also email me at m_muehlbauer@yahoo.com.