Post SJS: Specialized Contacts Needed

Hey, I'm Piggy. I was diagnosed with Steven's Johnson Syndrome on May 5th. If you haven't heard of SJS, in short, it's a rare and severe autoimmune disorder where your body attacks itself and essentially burns all your skin off (inside and out). Not only did I get SJS, but I got SJS/TENs, which has a 20% mortality rate...but I survived b****!

I was in the hospital for 31 days total and was in critical condition for a lot of that time. I was discharged June 7th, but recovery does not end there. I have months of recovery ahead.

Every single part of my body has been negatively impacted. But the biggest concern is my eyes and vision. Unfortunately, my left eye will never again produce it's own moisture because the tear duct is now scar tissue.

The resolution to this is getting specialized contacts that hold in moisture for my eyes. A hospital in Boston that developled these contacts is currently the only place I can go to get them. It is crucial that I do this as soon as possible.

My insurance will not cover anything, leaving me with the cost of $11,000 to keep my vision. I wasn't even planning on creating a gofundme, but after talking with my family and friends, they convinced me that there really isn't any other way.

Thank you for reading everything up until this point; every little bit helps.

For those of you who want to keep reading about the after effects of SJS, these are the things I'm currently dealing with.

-Eyes: I have light sensitivity, blurred vision, constantant dryness, multiple perscription drops that I have to put in every 2 hours, and daily doctor visits.

-Nails: I have lost all of my finger and toenails. You don't realize how essential fingernails are for day-to-day life until they're gone. They take 6 months to grow back.

-Severe Fatigue: Even taking a bath can feel exhausting; taking the train to get to doctor's appt. is too taxing, so I've had to use uber. I also deal with brain fog.

-Mouth: the inside of my mouth is sensitive akin to baby's skin. I can't eat anything hard, even 2nd day old pizza is too painful atm. While healing, my mouth fused together smaller, making it difficult to bite into large foods like sandwiches.

-Skin: My skin looks speckled from the scarring. Almost all of my skin is brand new (giving me baby soft feet which feels like a plus). It will take a year to fully heal.

-Mental-I haven't even began to process my hospital experience, the fact that I was so close to death, this new body I see in the mirror, and the disabilities SJS has left me with. Not to mention, while in the hospital, someone saw my condition and stole my credit card from my purse. I'm not going to disclose the money that they spent because I don't want this to be a sob story, but I truly just want to share my experience.

Again, if you have read to this point, thank you so so much for your time. Anything helps.

There will be updates as the day I leave for Boston approaches.

Xoxo,

Piggy