Assist Amber’s SJS Recovery Journey

Hello to my Friends and Family and to all of those who engage with me on any platform. If you have been following my journey (or even if you are new to my profiles), you are probably aware that I have been navigating a long recovery process stemming from my diagnosis with a potentially fatal and rare condition known as Stevens Johnson‘s/TENS.

Over a year has passed since my initial hospitalization and I cannot say how grateful I am just to be alive. I was able to go back to work full-time, secure my own apartment, and purchase my very first car. I had beaten the odds and was doing things I wasn’t certain I’d ever be able to do again…

(Present day.) Unfortunately, my recovery took a regressive turn this past month. I went in to my eye specialist for what I had hoped to be a routine contact change visit. At my appointment, however, my doctors noticed the scar in my left cornea (that formed as an initial complication to the condition) had deteriorated about 50%. It was determined that in order to prevent further damage I needed a proactive and immediate procedure.

I went to my specialist and got a 20 mm ring made of amniotic membrane inserted into my eye. After 48 hours of having the membrane in my left eye, I began experiencing excruciating pain along with utterly debilitating headaches. It was later determined that the Prokera did not dissolve at all and had to be pulled from my eye. The pain of removal was beyond intense and a bandage lens was placed there temporarily and I was sent home.

Now I was essentially blind in my left eye and would need a full cornea transplant. However, because of my condition I no longer have regenerating stem cells or enough of my own cornea left for a transplant to attach onto—leaving me with little to no options. Some of the options I was given were removing the eye early before the infection spread and just getting a prosthetic or potentially waiting 6 to 9 months to see if a vision restoration procedure was a potential option.

In the wake of this corrective procedure gone wrong, I have been seeing a specialist at Johns Hopkins in Baltimore for the past month. The appointments have been frequent, far, and tiring. I have been traveling back-and-forth from DC to Baltimore once or twice a week in hopes of finding a solution to my blindness. Most recently, the doctors at Johns Hopkins performed yet another emergency surgery in hopes of restoring my cornea.

I have been away from work this entire time with no choice but to leave my home and brand new car unattended. Moreover, due to the condition of the eye I am still under aggressive care. I require weekly appointments, hourly eyedrops, and medications; and I must spend a lot of my time researching and seeking out various mental health and physical pain remedies as I await a vision restoration procedure. There is still no vision in my left eye nor has its appearance improved by any significant means. Due to the seriousness of my condition and my lack of vision I am also currently unable to go back to work or drive.

I am hoping to make a strong recovery from this and I am faithful that I will be able return to work by the end of the summer. My doctors have instructed me to take it easy but as we all know life does not pause while we face challenges. Due to the piling expenses surrounding my many procedures, the costs of travel back and forth to my specialist, and my general living expenses, the inability to work is just an insult to injury when compared to the hefty costs I currently face. To be transparent: I was just getting on my feet only to have another two months and counting without income. All of this is set against the responsibilities of the new normalcies I was proudly building before the “proactive” and immediate procedure gone wrong. Also to my surprise I do not qualify for disability as I do have 20/30 vision in my right eye.

Please share my link with those you know. I set a goal just under what my current balances are but any denomination helps.