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I know an awful lot of us with dry eye struggle with maintaining hope about their quality of life in the future. There's lots of questions we struggle with, such as:
And when I think of this amazing community of people - a community that evolves all the time - many of you are a stunningly beautiful embodiment of those truths and I feel so grateful to each and ever one who has stuck around and by their presence give hope to others.
Everyone is different. Everyone has a different combination of things going on with their eyes, and everyone is at their own unique place in terms of whether it seems healthier and better for them at the time to fight for a particular type of progress clinically, vs fight for symptom improvement alone, vs fight for their quality of life more broadly, whether addressing mental health impact of the eyes or whatever. I'm afraid I went on a bit of a rant recently (in the suicide thread context) which in retrospect went overboard in one direction, just giving my voice to frustration with dogmatic thinking about dry eye as being, by definition, chronic and progressive, but maybe straying into being dogmatic myself.
But what really prompted this post today is the question of potential for actual clinical improvement of forms of dry eye and/or neuropathic corneal pain. I feel that this possibility gets dismissed far too much both by doctors and by patients.
I received the most extraordinary email yesterday from someone I have known off and on for many years. It was personal and I won't share it but there were some elements in it that I'm going to because I think it might surprise some of you.
On corneal nerves:
THEN: This individual had proof of corneal nerve structure damage via confocal microscopy.
NOW: This individual has proof of corneal nerve healing via confocal microscopy. The nerve structures are now deemed normal. That has not translated into pain disappearing, but pain has improved.
On life function:
THEN: This individual could only maintain a tolerable level of comfort in a dark room, and was off work for 5 years.
NOW: This individual has been back to work on a computer full time for an entire year.
On tear secretion including lipids:
THEN: This individual had 40% atrophy and had no expectation by clinicians or self of any improvement, the only goal was to try to prevent additional atrophy.
NOW: This individual is experiencing increased increased lipid secretion and their schirmer score has returned to normal range.
On sclerals:
THEN: This individual was fitted for PROSE but even with very large lenses, any exposed ocular surface area was intensely painful.
NOW: This individual has been able to phase off of sclerals even in the midst of increased computer use.
Food for thought.
Healing happens. In this case, it was the result of years extraordinary perseverance on the patient's part coupled with finding the right information at the right time coupled with extraordinary healthcare providers. It took time. But it happened.
There really are solid grounds for hope, even in extreme cases.
- Do I keep fighting for a progress (or a cure) or do I accept my current status as my new normal?
- How do I (or do I) face the future if the idea of my current level of pain or other symptoms continuing long-term terrifies me?
- The doctors tell me it's chronic, and maybe progressive. Is this true?
- If this is progressive, what will life be like when I'm 60? 70? 80?
- And so on.
And when I think of this amazing community of people - a community that evolves all the time - many of you are a stunningly beautiful embodiment of those truths and I feel so grateful to each and ever one who has stuck around and by their presence give hope to others.
Everyone is different. Everyone has a different combination of things going on with their eyes, and everyone is at their own unique place in terms of whether it seems healthier and better for them at the time to fight for a particular type of progress clinically, vs fight for symptom improvement alone, vs fight for their quality of life more broadly, whether addressing mental health impact of the eyes or whatever. I'm afraid I went on a bit of a rant recently (in the suicide thread context) which in retrospect went overboard in one direction, just giving my voice to frustration with dogmatic thinking about dry eye as being, by definition, chronic and progressive, but maybe straying into being dogmatic myself.
But what really prompted this post today is the question of potential for actual clinical improvement of forms of dry eye and/or neuropathic corneal pain. I feel that this possibility gets dismissed far too much both by doctors and by patients.
I received the most extraordinary email yesterday from someone I have known off and on for many years. It was personal and I won't share it but there were some elements in it that I'm going to because I think it might surprise some of you.
On corneal nerves:
THEN: This individual had proof of corneal nerve structure damage via confocal microscopy.
NOW: This individual has proof of corneal nerve healing via confocal microscopy. The nerve structures are now deemed normal. That has not translated into pain disappearing, but pain has improved.
On life function:
THEN: This individual could only maintain a tolerable level of comfort in a dark room, and was off work for 5 years.
NOW: This individual has been back to work on a computer full time for an entire year.
On tear secretion including lipids:
THEN: This individual had 40% atrophy and had no expectation by clinicians or self of any improvement, the only goal was to try to prevent additional atrophy.
NOW: This individual is experiencing increased increased lipid secretion and their schirmer score has returned to normal range.
On sclerals:
THEN: This individual was fitted for PROSE but even with very large lenses, any exposed ocular surface area was intensely painful.
NOW: This individual has been able to phase off of sclerals even in the midst of increased computer use.
Food for thought.
Healing happens. In this case, it was the result of years extraordinary perseverance on the patient's part coupled with finding the right information at the right time coupled with extraordinary healthcare providers. It took time. But it happened.
There really are solid grounds for hope, even in extreme cases.
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