By Bracee Dudley
After attending a session about PROSE lenses at the 2014 National Family Conference, Bracee and her parents wondered if this was the solution they had been seeking…
The benefits of using the BostonSight® PROSE (prosthetic replacement of the ocular surface ecosystem) contact lens include reduced dry eye symptoms, improved vision by sharpening irregularities in the cornea, and protecting the cornea from the outer environment including the eyelids. In some patients, even the eyelids could scratch the corneas themselves.
Overall, these new contact lenses that the corneal specialist in Indianapolis didn’t know about seemed to be the remedy for my eternal photophobia and eye problems. The question was, how was I to attain it?
From Indiana, the closest PROSE provider was the Wilmer Eye Institute and Dr. Michelle Hessen at John’s Hopkins Hospital in Baltimore, Maryland. We set out to get a referral from my local ophthalmologist. By the time that was done, we had gotten a response from Dr. Hessen who was on maternity leave for a few months and wasn’t going to be scheduling appointments until mid January.
I had to wait an entire semester until I could receive the panacea for my eyes, and that was definitely a tough wait. By the time mid-January rolled around, we still hadn’t completely transitioned to the insurance that would have covered much of the cost of PROSE (which was estimated to be about $11,000). Because we were unsure of the insurance, we had to push the appointment back even further, to late February.
Frustration ensued, but schoolwork and extracurriculars kept me occupied until we could finally schedule our first appointment for February 23, 2014. By then, we were officially under insurance that would cover much of the cost. (Editor’s note: With insurance coverage, the Dudley family paid less than $2,000.)
The night before we left was very stressful. The “second annual polar vortex” of the Midwest and Eastern United States had blessed Indiana with much snow, enough for some snow days around that time. The night before I remember really hoping and praying for it to hold off for one day so my dad and I could drive the ten hours from Indiana to Maryland, where we were to stay with Marc Steingesser and his family, half an hour outside of Baltimore. I knew that if we were unable to leave that Sunday morning, then I would be forced to wait until APRIL to get another appointment. That just could not happen. NO way! I remember thinking the potential snowstorm that was so iffy was symbolic of my never being completely sure of what I was seeing, always being blinded by the white and the light.
By a miracle, we were able to leave that day. When we got there, Marc and his family welcomed us with open arms into their wonderful home and we got settled in. Marc had gone through the process of getting PROSE several years before, and although he prepped me the night before and the morning of the first appointment, I still felt unprepared for what was to happen the next morning.
Bright and early on Monday morning, we arrived at Johns Hopkins Hospital and met Dr. Michelle Hessen and the PROSE coordinator, Michelle Ricks. The first two to three days of appointments comprise the “getting over the hump” phase. As the process normally goes, Dr. Hessen starts with a default size of contact lens with no prescription in it, in order to ensure that the patient is able to get it in and out with minimal issues. The patient has to get into a fairly uncomfortable position of chin touching chest, looking all the way down and holding the bottom lid open. The doctor then puts in the solution-filled contact lens in the eye that continues to look downward. The lens stays on by suction from the saline. However, due to the corneal reflex of the eye that physically reacts to the stimulation of the cornea (such as insertion/contact with foreign artifacts, sudden bright lights, etc), the eye tends to roll upward, making it difficult to insert the contact lens.
This happened to me many more times than I’d like to admit on the first day. As time when on, even when we switched eyes in attempt to at least get ONE lens in, the reflex only got stronger, and my frustration grew. Anxiety arose, along with invading thoughts about giving up.
Maybe I wasn’t good enough for it, maybe I couldn’t do it. Maybe I didn’t deserve it. Hmm. Yes, that was it. Of course I didn’t deserve it, of course I wasn’t to get it, because in the past doctors have confirmed limited options for me and all the EEC symptoms That was just the way things were, the way life was. Life isn’t fair, and all I can do is accept it. A person like me, with a face like mine, maybe just in this moment in time the opportunities for me just weren’t available yet.
This toxic wave of negative self-talk was overwhelming as were the tears of frustration that accompanied it. The day was done, and progress wasn’t made. Mondays will forever be the bane of human existence.
Tuesdays are usually better, right? I got one of them in, and that was it. I felt a little better but still kind of worse, due to the “I was SO close” feeling that also hit me. I didn’t understand what was wrong, why couldn’t I just think to myself like Nike, Just Do It, and then do it?
Sadly, it wasn’t that simple.
TO BE CONTINUED…
Bracee Dudley is a high school senior who is affected by ectrodactyly ectodermal dysplasia-clefting syndrome (EEC). She is contributing this three-part series on how she learned about PROSE lenses and her journey to obtain them and find relief for her debilitating dry eyes.
Learn more about the BostonSight® PROSE at the Boston Foundation for Sight web page: https://www.bostonsight.org/PROSE-treatment/About-PROSE
Stay tuned to the blog for the conclusion of Bracee’s story!