Macular Degeneration and Eye Disease Patient Stories
Willie Joswig (81 years old), Wet Macular Degeneration
Home: Canada
Below is an English translation and original letter from Mr. Joswig. The clinic has medical records on file from Mr. Joswig's Ophthalmologist confirming that his best corrected vision on September 3, 2009 was, right eye, 20/100, and left eye, 20/200. He had stem cell treatment via retrobulbar injection in November 2009. His best corrected vision as of September 30, 2010 is, right eye, 20/100, and left eye, 20/100. So objectively, he has improved from 20/200 to 20/100 in the left eye since undergoing stem cell therapy.
Letter Translation in English
I have just spoken to you on the phone. As I have mentioned during our conversation my vision has significantly improved. However, these improvements were experienced around six months after the operation. Just after the operation, I was able to read the newspaper without glasses. Then after 6 weeks, I did not believe in miracles anymore since my eyesight had deteriorated again. A few weeks ago, I looked at a book and found out that I was able to read again. This time it will persist. I know that. I would like to thank you and all the medical team that helped me with my improvements. I really appreciate it. I give you the right to publish my story and in order to help other patients, I will advise anyone who wishes to contact me.
Home: Canada
Below is an English translation and original letter from Mr. Joswig. The clinic has medical records on file from Mr. Joswig's Ophthalmologist confirming that his best corrected vision on September 3, 2009 was, right eye, 20/100, and left eye, 20/200. He had stem cell treatment via retrobulbar injection in November 2009. His best corrected vision as of September 30, 2010 is, right eye, 20/100, and left eye, 20/100. So objectively, he has improved from 20/200 to 20/100 in the left eye since undergoing stem cell therapy.
Letter Translation in English
I have just spoken to you on the phone. As I have mentioned during our conversation my vision has significantly improved. However, these improvements were experienced around six months after the operation. Just after the operation, I was able to read the newspaper without glasses. Then after 6 weeks, I did not believe in miracles anymore since my eyesight had deteriorated again. A few weeks ago, I looked at a book and found out that I was able to read again. This time it will persist. I know that. I would like to thank you and all the medical team that helped me with my improvements. I really appreciate it. I give you the right to publish my story and in order to help other patients, I will advise anyone who wishes to contact me.
Johan Grove (44 years old), Fundus Flavi Maculatis
Tell us about yourself and your eye condition?
I am Johan Grové (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, recognizing 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 clinic 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 procedure can 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 South Africa 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. 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!
Tell us about yourself and your eye condition?
I am Johan Grové (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, recognizing 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 clinic 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 procedure can 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 South Africa 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. 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!
Nancy Rice (75 years old), Dry Macular Degeneration
Patient Background
All day today I have watched the falling snow with the full realization that it might not have been possible but for the grace of things made possible in this wonderful world of ours. I live near Bucharest now, but I lived most of my life in Texas where, in my last position before retirement, I was fortunately selected to be a counselor for disabled students in a community college. It was there that I became aware of the kinds of assistance needed by people who have lost their vision - even a part of it.
Diagnosis
Thus, about ten years ago when my ophthalmologist told me that I had the earliest signs of Macular Degeneration, I knew what that meant and knew that I had to prepare myself for the eventuality of the loss of the major portion of my sight. I took the suggested vitamins and minerals, ate accordingly and did research to see if there was anything that could be done to preserve that precious gift of sight.
So much of the literature on the subject of AMD was disappointing to say the least. Nothing had been discovered to combat the onslaught of drusen that gradually knocks out one's central vision. One treatment has been found to help those with wet AMD, but none at all for the dry version which is what afflicts me. I am grateful that my situation is not as serious as it could be, but still cherish the privileges that come to me due to my ability to see and that I do not want to lose. Having these drusen interfering with my vision, I am more acutely aware of these as I go about the normal activities of the day. To see the falling snow, to read, to use the computer, to see the faces of those around me and the pictures that come via the computer, not to mention email contact with friends from so many places in the world - these are just a few things for which I am grateful.
Stem Cell Therapy
In the fall of 2008 in email conversations with my sister, I became aware of the possibility of stem cell therapy. Research on the Internet produced several options. Therefore, in November, 2008, my husband and I flew to the clinic where the implantation of stem cells from my own bone marrow was accomplished. The extraction of bone marrow was not at all painful, nor was the implantation of the resulting stem cells. I was very fearful that I would not be able to tolerate such procedures, but it was not so. No fear, no pain. The following day my eyes were swollen and bloodshot and I could see the world only through tiny slits. I was worried, but consolation was at hand and I was grateful that my husband was with me even though I could have managed alone.
Results
Since then I have continued researching AMD on the Internet and it was there that I read that timing is so important to the maintenance of one's ability to see. The most recent research has reported that, thus far, stem cell implants have not recovered lost sight, BUT with stem cell implants the disease does not seem to progress! And that is so with me. I have maintained periodic visits with my ophthalmologist in Bucharest. She reports that the drusen are the same. I was very disappointed when she said that. I thought that I had made a huge mistake until I realized that I needed to ask her another question: Have the drusen gotten worse? "No," she said. "They are the same." The Rx for my glasses is the same as well. It has not changed since my stem cell treatment and though cataracts interfere in their way, I can still drive, watch TV and do all those things which I could not otherwise accomplish. Reading the small print? Not a problem. There are remedies for that. The Amsler Grid? I thought that the lines were beginning to bend, but now they are in a proper grid, just a bit squiggly in places! I feel blessed indeed. Thank you!
Patient Background
All day today I have watched the falling snow with the full realization that it might not have been possible but for the grace of things made possible in this wonderful world of ours. I live near Bucharest now, but I lived most of my life in Texas where, in my last position before retirement, I was fortunately selected to be a counselor for disabled students in a community college. It was there that I became aware of the kinds of assistance needed by people who have lost their vision - even a part of it.
Diagnosis
Thus, about ten years ago when my ophthalmologist told me that I had the earliest signs of Macular Degeneration, I knew what that meant and knew that I had to prepare myself for the eventuality of the loss of the major portion of my sight. I took the suggested vitamins and minerals, ate accordingly and did research to see if there was anything that could be done to preserve that precious gift of sight.
So much of the literature on the subject of AMD was disappointing to say the least. Nothing had been discovered to combat the onslaught of drusen that gradually knocks out one's central vision. One treatment has been found to help those with wet AMD, but none at all for the dry version which is what afflicts me. I am grateful that my situation is not as serious as it could be, but still cherish the privileges that come to me due to my ability to see and that I do not want to lose. Having these drusen interfering with my vision, I am more acutely aware of these as I go about the normal activities of the day. To see the falling snow, to read, to use the computer, to see the faces of those around me and the pictures that come via the computer, not to mention email contact with friends from so many places in the world - these are just a few things for which I am grateful.
Stem Cell Therapy
In the fall of 2008 in email conversations with my sister, I became aware of the possibility of stem cell therapy. Research on the Internet produced several options. Therefore, in November, 2008, my husband and I flew to the clinic where the implantation of stem cells from my own bone marrow was accomplished. The extraction of bone marrow was not at all painful, nor was the implantation of the resulting stem cells. I was very fearful that I would not be able to tolerate such procedures, but it was not so. No fear, no pain. The following day my eyes were swollen and bloodshot and I could see the world only through tiny slits. I was worried, but consolation was at hand and I was grateful that my husband was with me even though I could have managed alone.
Results
Since then I have continued researching AMD on the Internet and it was there that I read that timing is so important to the maintenance of one's ability to see. The most recent research has reported that, thus far, stem cell implants have not recovered lost sight, BUT with stem cell implants the disease does not seem to progress! And that is so with me. I have maintained periodic visits with my ophthalmologist in Bucharest. She reports that the drusen are the same. I was very disappointed when she said that. I thought that I had made a huge mistake until I realized that I needed to ask her another question: Have the drusen gotten worse? "No," she said. "They are the same." The Rx for my glasses is the same as well. It has not changed since my stem cell treatment and though cataracts interfere in their way, I can still drive, watch TV and do all those things which I could not otherwise accomplish. Reading the small print? Not a problem. There are remedies for that. The Amsler Grid? I thought that the lines were beginning to bend, but now they are in a proper grid, just a bit squiggly in places! I feel blessed indeed. Thank you!
William B. (78 years old), Dry Macular Degeneration
Background
I was born on April 13, 1932 and have lived in the Western United States all of my life. After my retirement in 1992 I became a tax preparer and still continue to usher part-time at the Benaroya Hall where the Seattle Symphony performs.
Before Stem Cell Therapy
For many years my eyesight gradually deteriorated and in 2006 my sight became too bad to be employed as a tax preparer. I continued to work as an usher, reading tickets with visual aids until December 2009. My symptoms became pronounced and I was not able to see the curb, cracks in the sidewalk, street signs, using sharp knives, watch sporting events, drive, etc.
At the Clinic
We received professional care from all involved in the process. The clinic was very clean, the doctor was very efficient in caring for the five of us that were there in January 2010. The weather was very cold but the people in the clinic were friendly and helpful.
After Stem Cell Therapy
My eyesight has improved from 20/400 to 20/150 in my left eye and from 20/80 to 20/70 in my right, as measured by my ophthalmologist in Seattle.
I can now see a sign from our window (we live on the 20th floor of a condominium) that is 1 mile away that I have not seen for at least six years, I can walk by myself safely down the sidewalk and read signs, I can read with good lighting and have returned to ushering as I can again read the tickets. My eyesight still does not allow me to drive.
Recommending Stem Cell Therapy to Others
I am willing to share my experience and I tell everyone it is a personal decision that one must make. I freely give the web site address to anyone interested.
Background
I was born on April 13, 1932 and have lived in the Western United States all of my life. After my retirement in 1992 I became a tax preparer and still continue to usher part-time at the Benaroya Hall where the Seattle Symphony performs.
Before Stem Cell Therapy
For many years my eyesight gradually deteriorated and in 2006 my sight became too bad to be employed as a tax preparer. I continued to work as an usher, reading tickets with visual aids until December 2009. My symptoms became pronounced and I was not able to see the curb, cracks in the sidewalk, street signs, using sharp knives, watch sporting events, drive, etc.
At the Clinic
We received professional care from all involved in the process. The clinic was very clean, the doctor was very efficient in caring for the five of us that were there in January 2010. The weather was very cold but the people in the clinic were friendly and helpful.
After Stem Cell Therapy
My eyesight has improved from 20/400 to 20/150 in my left eye and from 20/80 to 20/70 in my right, as measured by my ophthalmologist in Seattle.
I can now see a sign from our window (we live on the 20th floor of a condominium) that is 1 mile away that I have not seen for at least six years, I can walk by myself safely down the sidewalk and read signs, I can read with good lighting and have returned to ushering as I can again read the tickets. My eyesight still does not allow me to drive.
Recommending Stem Cell Therapy to Others
I am willing to share my experience and I tell everyone it is a personal decision that one must make. I freely give the web site address to anyone interested.