KCGB TOP POSTS

FIND US ON FACEBOOK HERE

GETTING AN ACT IN THE FREAK SHOW

Written in

by

Dweezil

playingthehandiwasdealt's avatarPlaying The Hand I Was Dealt

Image Source: http://www.medical-dictionary.thefreedictionary.com

Why does Ehlers-Danlos syndrome (EDS) have to be a freak show disease?  My skin doesn’t stretch enough to be the India Rubber Woman and I’m not hypermobile enough to be the Human Pretzel, but I look like a hybrid of marbled, blue cheese and the Purple People Eater from the venous pattern and purpura and petechiae covering my body from nearly head to toe.  The icing on the cake is the beyond frustrating keratoconus, which turned my corneas into little cones. Alas, the latest problems that have been discovered could surely guarantee me an act in the freak show.

 

I’ve been working with my great, new optometrist over the past couple of months to try and get scleral contact lenses, which can correct keratoconic vision to a point by creating artificial corneas in essence.  As I’m post-CXL surgery, the progression of my keratoconus (KC) has…

View original post 1,654 more words

Tags

2 responses to “GETTING AN ACT IN THE FREAK SHOW”

  1. playingthehandiwasdealt Avatar
    playingthehandiwasdealt

    Thanks for the reblog! I wonder if anyone will get why a post about Ehlers-Danlos syndrome AND KC is on here? I appreciate it as you’re helping me get the message out that some KCers have certain types of EDS or Marfan’s and so on (or vice versa).
    A x

    Reply
  2. dweezil1968 Avatar
    dweezil1968

    hi no worries happy to help- these syndromes have been mentioned with kc before- it is clear more research is needed

    Reply

Leave a comment