meI’m  Megan.  Recent Duke grad, aspiring blogger, and typical 22 year old trying to find her way in the world. However, there is a catch. Having been born with a rare connective tissue disorder called Epidermolysis Bullosa. I have also, for as long as I can remember,  been asked  “what’s the matter with you?” It would seem that the morbid curiosity of strangers leaves little room for scruples. So, seeing has how I have been asked time and time again, here is my answer.

Nothing, really. My answer is nothing. I have a condition. I also am a person with hopes, dreams and aspirations just like any other. There are many matters, however, that my condition has caused me to have to grapple with on a daily basis. This blog will tackle such matters, with more of a framework of disability with a dash of overarching social commentary through the lens of someone who lives not just with a disability, but a complex rare disorder, and how that’s shaped how I see the world. This is the matter with Megan.


8 thoughts on “About

  1. Hello
    What a great into to your blog 🙂 I want to read more but it is late and I need sleep.
    I have a skin condition too – called Ichthyosis – and I’m also a blogger.
    Bookmarking ŷour page now 🙂

  2. Hi Megan, I’m the Director of Content at Medium, a new publishing platform from Twitter founders Ev Williams and Biz Stone. I’m also on the board of the Jackson Gabriel Silver Foundation (jgsf.org), so I’m intimately aware of EB.

    I’d love for you to post your pieces on Medium. If you’re interested, please email me.

  3. Hi Megan, i think you’re amazing. not just because you’re suffering with this condition, but also because you’re really freaking funny and not to mention pretty. to be as funny and inspirational as you is pretty damn rare, you go girl.

  4. Hi Megan,
    I’m a paraplegic that has also been prayed over (multiple times) and am exploring the issue for a documentary. I’d love to use your piece and interview you for it.

    If you have an interest, please shoot me an e-mail. chrismielo[at]gmail

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