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    Posted March 19, 2014 by
    This iReport is part of an assignment:
    Living with a rare disease?

    Eye on the Progress: My Life With Retinitis Pigmentosa


    At the age of 28, I was diagnosed with Retinitis Pigmentosa (RP), a degenerative eye condition that leads to eventual blindness. Over the next decade, my sight deteriorated a little more each year until finally, at the age of 40, I was completely blind. There are two kinds of RP: the kind where sufferers lose peripheral sight, which is the most common, and the kind where sufferers, like me, lose central vision. While I still retain a very small amount of peripheral vision—that is, I can see lights, windows and shapes passing by me, it’s not sufficient to truly recognize anything or to orient myself in an unfamiliar environment.


    For years, I didn’t let on that I was going blind, though it became very hard to pretend. If my friends and I were at a bar, I would use my peripheral vision and look to the left or the right until I was able to see my drink. If anyone asked about my vision, I lied and made up an excuse as to why my vision was affected at the moment. I became good at inventing these excuses on the fly to hide what was really happening.


    Today, I live alone which I’m able to do because I’ve grown very comfortable and familiar with my home environment. Perhaps the biggest challenge I am faced with is leaving my house and going to locations I haven’t been before, or anywhere outside my comfort zone. This is the hardest part of my disease. In my younger years when I still had normal vision, I was able to travel freely—and alone. Until age 26, I was even able to drive a car and get around entirely on my own. I traveled with ease, living in several countries before settling in Finland. It’s been difficult to give up some of the independence I once enjoyed.


    In November of 2008, I took a big leap of faith and entered a clinical trial that was evaluating a new technology designed to restore partial sight to patients blind from RP. My interest was peaked upon reading an article about a blind person in the trial who was able to see the dots on the electrodes of the microchip technology. This may not seem like much to normal-sighted people, but I found it truly fascinating and encouraging, and was thrilled with what this could mean for the blind community. I proceeded to contact the sponsor of the trial and developer of the microchip, Retina Implant AG, and after a thorough screening, I was enrolled in the trial.


    Shortly after, I became the 11th patient in the world to be implanted with the subretinal microchip. I was so excited and eager to get involved in the hope that this research could benefit my fellow RP sufferers now and in the future. Dr. Helmut Sachs, chief ophthalmologist at Dresden, was the clinician who implanted the microchip underneath my left retina—a process that took nearly seven hours. Three to four days after the operation, they began testing the electrodes in the chip by activating it. I was a bit nervous that the chip wouldn’t work, but when I saw dots on the electrodes, just like the man I read about in the newspaper, I was ecstatic! The most exciting part of having the microchip implanted was that I was finally able to see something with the center of my eye. Instead of having to scan a room to see an object peripherally, I could see that it was right there in front of me. Perhaps the most exciting moment—for both the Principal Investigator and myself—was when I was able to identify an apple and a banana on my own, which signified that the implantation was a success! It was later determined that I was the first patient in the clinical trial to achieve breakthrough results with the subretinal implant, as I was also able to read large letters and identify additional normal-sized objects.


    Since my implantation was a part of three-month clinical trial, the microchip ultimately had to be explanted. I was disappointed that my partially restored vision was taken away, but I do understand that it was all part of the study.


    Living with a rare disease can be challenging as progress to fight the disease can be slow moving or never come at all. That’s why it was so important to me to participate in this clinical trial—not just for myself, but for future generations to come. I’m proud to have been one of the first patients to participate in this ground-breaking research as its success led to a second, larger clinical trial in multiple countries across Europe. In July 2013, Retina Implant received CE Mark for their subretinal microchip, the Alpha IMS, making it available to RP patients across the European Union. By participating in this research I feel like I played a small part in making this happen. In February 2014, I was fortunate enough to visit the Tuebingen Eye Clinic for a preliminary screening to receive the CE marked Alpha IMS subretinal implant. Having experienced such positive results from the clinical trial I had participated in five years ago, I am very excited about the prospect of once again receiving the Alpha IMS implant and having my vision, and hope, more permanently restored.

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