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I just read today's DEZ bulletin, and I want to thank Rebecca for saying the following:
"Also, for those of you who are reading this and are wondering whether it's relevant to you, it's worth exploring because I believe this is a significantly underdiagnosed condition - and even in many cases where it's been diagnosed and is being treated, often the patients have no idea that this is what they have or what it means.
"So here are some clues that MIGHT indicate that you have ABMD: If your doctor has ever recommended Muro 128 ointment (or equivalent 0.5% sodium chloride ointment), or you remember hearing something about "dot map fingerprint" or "basement membrane" at an appointment, or if you get corneal erosions regularly, or if night/early morning are when your eyes have their biggest struggles, or if your doctor has ever talked about the possibility of lasering or debriding your epithelium (outermost layer of the cornea). If one or more of those apply to you, ask your doctor at the next visit whether s/he thinks you may have ABMD. If your symptoms are mostly at night or are worst at night, make sure you say so! In fact, for best results I highly recommend writing up a 1-pager with bulletin points describing your history, symptoms and their timing and frequency, and what treatment(s) you've tried, for how long and whether they were effective - then faxing it to your doctor the day before the appointment."
I remember reading somewhere that 2-40% of people have ABMD / EBMD. What's wrong with that figure? Clearly, people with it do not always have RCE's, and many doctors often cannot even see it. I also read that although people may have it, only 10% of those with it suffer from recurrent corneal erosions. So, I very much appreciate Rebecca's putting this notice out in the Bulletin. If I had known about my condition and precautions that I could have taken, I would have done it. Instead, I went to ophthalmologists for seven years, complaining about dry eyes and hearing that my eyes looked "fine" and being given some sample drops and sent home.
In a way, I am glad that I found out the problem, because if I had suffered with bothersome eyes, even without RCE's, for so long, there's no reason to think that I would not still be suffering. Instead, I am taking steps to improve, and I just feel much better knowing that my complaints are legitimate and not my being a complainer, which is how I felt when I would tell doctors about my dry-feeling eyes. I may be a complainer, but I like to think that I really have something to complain about.
Thanks, again, Rebecca!
--Liz
"Also, for those of you who are reading this and are wondering whether it's relevant to you, it's worth exploring because I believe this is a significantly underdiagnosed condition - and even in many cases where it's been diagnosed and is being treated, often the patients have no idea that this is what they have or what it means.
"So here are some clues that MIGHT indicate that you have ABMD: If your doctor has ever recommended Muro 128 ointment (or equivalent 0.5% sodium chloride ointment), or you remember hearing something about "dot map fingerprint" or "basement membrane" at an appointment, or if you get corneal erosions regularly, or if night/early morning are when your eyes have their biggest struggles, or if your doctor has ever talked about the possibility of lasering or debriding your epithelium (outermost layer of the cornea). If one or more of those apply to you, ask your doctor at the next visit whether s/he thinks you may have ABMD. If your symptoms are mostly at night or are worst at night, make sure you say so! In fact, for best results I highly recommend writing up a 1-pager with bulletin points describing your history, symptoms and their timing and frequency, and what treatment(s) you've tried, for how long and whether they were effective - then faxing it to your doctor the day before the appointment."
I remember reading somewhere that 2-40% of people have ABMD / EBMD. What's wrong with that figure? Clearly, people with it do not always have RCE's, and many doctors often cannot even see it. I also read that although people may have it, only 10% of those with it suffer from recurrent corneal erosions. So, I very much appreciate Rebecca's putting this notice out in the Bulletin. If I had known about my condition and precautions that I could have taken, I would have done it. Instead, I went to ophthalmologists for seven years, complaining about dry eyes and hearing that my eyes looked "fine" and being given some sample drops and sent home.
In a way, I am glad that I found out the problem, because if I had suffered with bothersome eyes, even without RCE's, for so long, there's no reason to think that I would not still be suffering. Instead, I am taking steps to improve, and I just feel much better knowing that my complaints are legitimate and not my being a complainer, which is how I felt when I would tell doctors about my dry-feeling eyes. I may be a complainer, but I like to think that I really have something to complain about.
Thanks, again, Rebecca!
--Liz
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