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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.

7 comments »

  1. Hey, Megan, I love your writing and I would like to interview you for Raw Story.(http://rawstory.com)

    If you have some time today, please contact me? Thanks!

    david_ferguson[at]rawstory[dot]com

  2. 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 :)

  3. psumama says:

    So glad to have found your blog! Thank you for sharing!

  4. Kate Lee says:

    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.

  5. Hi Megan
    I was wondering if you would like to do a guest post for my blog? You are such a great writer, and express the feelings of living with a severe skin condition so well. You can contact me at itchy_81 at hotmail dot com.
    I write about life with Ichthyosis.
    I’d love to have you :) Thanks!
    Ps – linked to your blog on mine yesterday :)

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