Meet Heather, 43, how has been dealing with Plasminogen Deficiency since she was a baby. Learn more about Plasminogen Deficiency Awareness Week at plgdweek.com
"My name is Heather and i am 43, i was a baby - my parents first started taking me to the eye doctor probably when i was 6 months old noticing that there was something wrong. You know, i don't know all the symptoms you know there was stuff on my eyelids that's what first started coming up. That's the first symptom usually.
They took me to the eye doctor and since it was 43 years ago there was not a lot of research and stuff so i mean my eye doctor didn't know even really what it was called or how to treat it. That's probably the biggest thing, going to many doctors and having surgery, either cataract surgery or having the growths taken off. Surgery in hospital itself just makes me nervous. Having many trial's with different medications and even surgery, hopefully, i don't know my physicians have wrote anything about articles or things like that but you know, knowing my experience and what has failed me in the past hopefully along the line that wont be another patient if they get it or are diagnosed with it. They wont have to like take a certain drop or they will know what not to take, because i was started on i think it was steroid drops and that's what caused my cataracts so right off, after that - that was not a good way. And also, having the lesions taken off of your eyelids or even on your gums it just comes right back, i mean it may come back the same day. So that's always something that needs to be avoided because they're going to come back and maybe worse.
Hopefully there's a treatment on the horizon because we know what things don't work and things that have helped me through my ophthalmologist that i have actually been using for several years.