My Struggle with PMD
I was diagnosed with Pellucid Marginal Degeneration in January of 2011. At first I took it pretty hard, as my doctors estimated that I would only be able to see out of my right eye before needing a transplant for another 3 to 4 years due to how severely damaged my eye had already become. This was tough for me to swallow. Transplant? Really? Maybe It’s just me, but the whole transplant thing still feels a bit science fiction, futuristic, year 2050 to me.
As I went home with this news, I immediately went to the internet to research this disease, and inform myself about it, about treatment options, specialists, people who have had similar experiences, something anything as I couldn’t believe this was happening to me. The internet was absolutely no help as 90% of the jargon I didn’t know, and couldn’t understand, not to mention there is literally nothing about this disease on the internet. No help, no explanations, no treatments, no options.
Then I called another ophthalmologist basically to get a second opinion. In complete denial of my disease I did not inform the ophthalmologist of my disease hoping that the new doctor would either miss it, overlook it, and I could pretend that I didn’t have it. To no avail, my disease was found again, with an absolutely perfect text book example on my cornea map and topography.
I discussed with both doctors different treatment options, different possibilities, and different ideas of what we could do for the time being. Because of the ulcer on my eye I was unable to wear soft contacts and I was forced into getting glasses so I could somewhat function on a daily basis since my vision is already so poor. I had to take a leave of absence from work as my daily tasks involve working on a computer, reading text and typing. My distorted vision made everything appear that there were lines through everything I was attempting to read. On top of being annoying it was very difficult and frustrating and really made me really realize how much this disease was going to affect me.
{ 3 comments… read them below or add one }
I truly understand what you are going through. I am in the military and after comng back from Iraq, I srarted to get severe migranes. I went to the the Dr. and was prescribed medicine and was told about contributing factors, one of them being eye sight. So after almost a year and a half after my last optometry appt, I went to update my prescription. That is when I was told of PMD. I knew it was bad when the dr had a hard time breaking the news to me. Funny thing is that I never noticed my right eye was that bad, but once he had me cover my left eye I couldn’t see pass my nose. I went from wearing soft contacts to glasses. I also went through painful process of getting a hard lens for my right eye. It helps out tremndously and I am able to see 20/10 with a soft lens on my left eye and a hard lens on my right eye. I don’t wear it all the time as theycan get a little irritating. I mostly use them when playing sports, swimming or on special occasions. I use my glasses on a daily basis at work. Contacts on the weekend just so I can keep getting use to them. I had to change my life style as well. I no longer shoot right handed unless I wear my contact but after a while it starts to bother me.
I too desperatley search the internet for something to correct this problem but until then I keep my spirit up but being thankful I still have one good eye. Please keep me posted if you learn of something new. I will do the same. Klever
My husband, 33, was just told that he has PMD. He can see relatively fine with his soft lens contacts, but the doctors really gave us no answers as to what it could mean for him in the near future. Like you said there really is no information on the web. I am wondering how old you were when you were first diagnosed and what they said about the long term out look. My husband was told that even with corrective lenses he wouldn’t even be able to pass the test to drive. We are really interested in hearing your whole story.
hi!!!