A Rant About Latex

I hate latex. I hate going to the ER. I hate that I can’t go places without the (very real) fear of a reaction. I hate that my body thinks latex is going to kill me. I hate that my body tries to kill me because it thinks latex is going to kill me. I… Continue reading A Rant About Latex

Five Years

This is a picture of me, five years ago.  Five years ago, I had a surgery on my arm that was supposed to stop the tingling from a pinched nerve and prevent nerve damage.  Five years ago, that surgery damaged my nerves and sent my autonomic nervous system into a tailspin.  Five years later, I’m… Continue reading Five Years

Goals for 2014

Did you make any New Year’s Goals or Resolutions? I like the word goals better because it is something to work toward rather than saying I have to do it.  That means if I mess up, I can just get right back up and start off again, rather than giving up because I broke my… Continue reading Goals for 2014

Rare Disease Day – All About Stickler Syndrome

General Information The rare disease I live with is Stickler’s Syndrome, Type III (formerly hereditary arthro-ophthalmopathy) as a result of a mutation of the COL11A2 gene. Because of a genetic flaw, my collagen strand is weaker than normal.  This affects hearing, vision, facial development, and joints. Stickler Syndrome is so rare that it doesn’t even have… Continue reading Rare Disease Day – All About Stickler Syndrome

Rare Disease Day

About a year ago, I was diagnosed with Stickler Syndrome. Stickler Syndrome is a common, but rarely diagnosed progressive genetic disorder that causes severe myopia (nearsightedness), blindness, loss of hearing, facial development problems, hypermobility, and joint pain. I am finally to the point of acceptance that I’m willing to talk about it and be more… Continue reading Rare Disease Day