The number 4 is what I could see before my stem cell treatment. After the treatment I am able to see the smaller numbers 9, 4 and 7. This is an improvement of 5 lines on the eye chart.
Tell us about yourself and your eye condition?
I am Johan Grov√© (44) and I was diagnosed with Fundus Flavi Maculatis, a very specific type of Retinal Degeneration, at age 15. This eye condition causes the central vision to degenerate to a point where no reading or writing is possible. The Macula is also responsible for colour vision, recognising faces, reading and writing, in short - all detail vision.
Within the first six months of being diagnosed, I lost more than 50% sight. In 1991 when I completed my studies, my sight was much less (+/-20%). I studied part-time and started working at the South African National Council for the Blind in 1994 as a computer facilitator, training blind and partially sighted computer users for the next 14 years.
In August of 2008 I started working for Vodacom as a specific needs specialist. This was a dream come true!
What made you decide to undergo the Stem Cell treatment?
For 29 years I have never given up hope. I have always believed that I will regain my lost sight. I have continued my research during all these years, scanning the globe for possible solutions. At age 44, I believe I have found exactly what I was looking for; a company in Germany was doing procedures to help the condition using stem cell treatment. I live a full life. I have a wife and 3 children.
I have always worked full time, taking full responsibility for everything in my own life. I felt like I was watching an hour glass running empty. My hour glass, in terms of my sight, was 90% empty. This procedurecan truly be my lifelong dream coming true.
What was your remaining vision before the treatment?
At this point in time I had less than 10% vision left. Any improvement would be nothing short of a miracle.
Johan, when did you leave for this possible life changing procedure?
On 26 March 2010 we left S.A. from OR Tambo International Airport. Mignon (my wife), accompanied me.
You arrived on 27 March 2010, share with us your experience since then?
The public transport in Germany is any visually impaired person's dream come true. We used the train to go from the hotel to the hospital, from the hotel to do sightseeing, shopping and just anywhere! On Monday 29 March we arrived at the hospital and went straight to the clinic. We were greeted warmly and were asked to fill out some forms. The forms were automatically handed to my wife, Mignon, which of course I appreciated. While Mignon was filling out forms, I went for a quick blood test. Ten Minutes later the results of the blood tests came back just as Mignon finished the forms.
So on 29 March the reality of your dream started?
I was the first of the group of 4 patients to have the blood tests and now I was on my way to operating theatre for the bone marrow extraction. The procedure is first explained to you by the specialist during which time you can ask questions. This procedure is done under local anaesthetic and only takes between 10 and 20 minutes.
What was next?
On Wednesday, 31 March I reported back to the clinic to have the stem cell transplant. This procedure is done by the eye specialist herself.
Tell us about the procedure?
The stem cells that were collected from the bone marrow were then injected below the eyes, to the back of the eye. This procedure again is done under local anaesthetic and takes about 20 to 30 minutes. You are then required to wait in the recovery room for about 4 hours. After a visit from the eye specialist I was given the green light to go home!
Did you leave for South Africa then?
Many of the patients left the very next morning for their respective countries.
Mignon and I decided to spend a couple of days extra in case there were any complications. We made the best of it by travelling all over Germany! We took a boat trip on the Rhine River and travelled by train all the way to the south of Germany to Heidelberg. I bought a beautiful chess set in Heidelberg. (I have a tradition of buying a chess set, as I am a keen chess player, which is very unique to the country that I visit.)
Johan, you arrived back in South Africa on 12 April and you went back to the office, it was business as usual for everyone else, how did YOU feel?
This is where one of the most difficult times in my life started. You feel good about having done what you set out to do. You feel good about the opportunity well used. You are positive and believe that you have done the best thing at the best time in the best place. The road however is a very lonely one now. All the stress of getting there, doing the procedures, getting back home is gone. Back at the office everything continues as if nothing has changed. But the reality is, lots of things have changed. You are a very different person due to the experience you had. You have set an enormous goal and have reached it. You have pushed yourself to a completely new level, emotionally and psychologically. Now the name of the game is patience.
How long did you have to wait to "see" results?
I had to wait three months for my first visit to the eye specialist, then another three months to the second follow up, then according to those in the know anything from one to six more months for the full results. This has been very hard on me....If it was not for the fact that I am flooded with work, I have no idea how I would get through this. Also, if it was not for the prayers and words of encouragement from family and friends, this would be a lot harder.
And did you improve?
Yes indeed. My vision has improved from 6 / 360 to 6 / 120, five lines on the eye chart after 7 months. ( as you can see on the picture). My color vision has improved to a point where I can see the actual color like dark brown, dark green, dark blue or purple. Previously I could only distinguish between light and dark colors. This is great!
Any success stories that you have heard about after the stem cell treatment?
According to a Professor in Peru, his friend who went for the same procedures in August 2009, had regained enough sight to be able to read and write by March 2010. So again - patience! It took him a full seven months to reach this point.
According to another patient whom I personally have contact with, sight has improved from 20 over 200 to 20 over 60 after only three months.
Johan, thank you for sharing your story with the Imfama readers, what message do you have for all our readers?
My sole purpose of sharing my story is to give hope to other people that might be in the same situation. To encourage them to never say never and to believe in themselves, but even more importantly, never underestimate the power of prayer!
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