Biograph

I am a 32 year old male living with a eye disease called degenerative myopia which basicly is extreme nearsightedness. It is the 7th highest cause of legal blindness in the world. The disease can cause other eye complications. In my case I´m diagnosed with macular degeneration which hit your central vision.

Picture from: high-myopia-eye-hospital.com

I was diagnosed when i was about 2 years old.  From birth no one expected me to carry the disease as many eye problem come from our parents or grandparents. And as far as I know none have nearsightedness to my degree in my family other then my kid brother. 

My parents first notice something was off when I started walking and I kept bumping into things at our house. At one time I runned into the coffé table - face first! Of course, I can´t remember that incident myself, but I guessed it must´ve hurt. So at this time my parents took me ophthalmology at countless occasions to find out what´s wrong. I guess they initially thought I do fine with glasses. It must have come as I shock when they find out that this isn´t a case of normal nearsightedness, this disease need constant monitoring from a OR, it can lead to a whole lot of different other eye diseases and he´s gonna have to wear medical glasses or contacts for rest of his life. 

But in all honestly, I was close to never bothered with my nearsightedness when growing up. Going to the OR was never a problem and grow custom to wearing contacts. I could do what most kids can do like play sports and go to normal school.

When you have degenerative myopia your eye keeps growing at escalating pace, especially during childhood and your teens. I was about -10 diopters when I was born and today I´m about -29 diopters in both eyes. And this progression will continue throughout adulthood as well. To give some perspective, most people living with nearsightedness is between -1 - -4 diopters and stable there. During this time I have to change my description in my contacts to be able to see as good as possible. 

The thing is, when your eye´s keeps alongening it can cause problem in the back of the eye. One common complication is when blood vessels at the back of the leaks into the retina, called Myopic Choroidal Neovascularization (Myopic CNV).

This is a good and short video describing the development. 

In a way I´m lucky. Beeing as nearsighted as I am this didn´t happen to me until November 2015. But when it happen I was shocked how fast the vision deteriorates. One morning I notice my right eye (the good eye, it´s always the good eye!) was kind of blurry. This have happened before but not at this magnitude. I always check with the OR as soon as I notice sudden changes in my vision. They had some trouble diagnostic me at first. To now if a blood vessel have leaked into the retina you need to take i photograph in the back of the eye. But I am so terrible nearsighted that  OCT-cameras, as they called isn´t manufacture to take decent photograph´s when your -29D as I am. The machine was only adjustable to -20D. Again - perspective! 

There isn´t any cure for degenerative myopia and there isn´t any way to prevent myopic CNV. Once it happens you can only slow down the progression or minimize the damage. Damage, meaning that blood vessels leaking and causes eye cells to die. The cells that are attacked are at the very center of the retina, the macula. Billions of cells in a small area that make you see details such as face impressions and fine printing.  

How you slow down the progression is by injecting a drug called Avastin (or Lucentis) in the back of the eye. Ideally this procedure should take place no later then two weeks after the first symptom. However in my case it took over a month before a received my first injection. 

Shortly after I notice a had harder time to read and straight things appear as crooked. A month after my injection my OR told be that scar tissue have developed in the macula and that there wasn't anything to do about it. I was very sad but also angry that I didn´t receive the treatment sooner, knowing that could have given me better chance avoiding a scar tissue.   

During the last 8 months my vision have continued to deteriorate and I have been given 2 more injections. I can´t recognizing people faces using only the right eye or read fine printing anymore. I struggle to see well in darkness and sadly I can´t see myself playing team sports like football and floorball with this low vision. Now my vision is about 20/200 in the right eye and left eye still going strong at 40/200. I have hard time using both eyes at the same time. It could be because my brain havn't grow use to the left eye being the strongest instead of the other way around since it has been before.  

However, I get along fine. I can still do most things as before. I have never been able to get a driver license so at least I don´t have to deal with that transition as many other do with macular degeneration.  

But worst thing, without a doubt, is not knowing how it´s gonna be in the long run. I know my eye´s are gonna keep alongening and I´m at a high risk of a various of eye diseases. Some diseases will make you even more low vision and some can leave more or less blind. In the back of my mind I´ve always been worried what´s gonna happen with my eyes when I grow older. But I haven´t given it to much thought since a haven't had any complications until I was 31 years old. Now it´s all I´m thinking about and all the worriness sickens me. 

I started this blog in some kind of self therapeutic purpose and I will try to post every now and then about vision updates and every-day life as a person with low vision.