Laura has had PIC for just over four years; here she shares how she came to be diagnosed and how she has managed in the time since. Also, have a read at the new name she has for PIC - one I think we should all adopt!
My name is Laura Dean, I am 43 tomorrow and have two teenage daughters and am married to my wife Emma for almost 6 years after being together for 12.
My condition started in late December of 2016 (the 19th to be precise) when I noticed an issue with my right eye, and in the space of 6-7 days I lost the vast majority of my right eye (RE) vision. After several visit’s back and forth to my eye casualty department I was told many different things by a number of doctors and zero treatment was given. I sat through Chrimbo dinner with only the sight in one eye and thinking it would be something fixable.
In early January I was informed by a doctor that in his opinion I had suffered a bleed several months prior to this and now had acute fibrosis, and it’s effects were now irreversible; I was told that nothing could be done to help me and I was sent home. I respectfully challenged this opinion, stating that my vision had deteriorated in a matter of days, not months as suggested and found the courage to ask for a second opinion. I don’t know how I did this, but I was in shock and knew I couldn’t just leave with this explanation which made no sense to me whatsoever. I had never experienced anything serious with my eyesight before, other than being short sighted and a glasses wearer since about the age of 7.
The second option bit.... I spoke at length with another consultant and shared the different views of each of the doctors and the consultant who said nothing could be done. I asked him to review my records over the past 3 weeks. Thankfully he did this and confirmed that previous doctors had confirmed a bleed. He agreed at this point to administer treatment in the form of lucentis injections but pre-warned me that any change was highly unlikely due to the size of what ‘appeared’ to be fibrosis, but nevertheless stated he would give me a chance. Fortunately the injection helped and restored my vision to 36/20 in my RE with no central vision due to scarring.
Barely 3 weeks later, My left eye (LE) suffered a bleed on the 12th Feb 2017 and being able to share what had happen in my RE doctors agreed to administer a lucentis injection on the 13th Feb. On the 30th March there was a second bleed on my LE which was again injected on the same day. I attended the hospital again on the 26th April after noticing my vision changing once again and was beside myself with worry about these persistent monthly attacks and progressive loss of sight. Fortunately the doctor who saw me confirmed PIC and my started me on a dose of steroids.
I returned to the hospital 3 May 2017, the doctor confirmed that the steroids had reduced some inflammation but that there was “more spreading” in a different direction. The doctor stated that this was a very aggressive eye disease, which he had never before and he had not treated or seen PIC due to it’s rarity. Additionally the doctor stated that the progression of the PIC was so fast that he could not understand how this could spread so aggressively in a matter of a week and appeared baffled as to what to do. I requested if I could be treated with lucentis injections as given the improvement prior to this in my other eye following this type of treatment. The doctor agreed with some reluctance and luckily it largely corrected my vision.
I pleaded with the consultant to referrer me to Moorfields Eye Hospital in London and Professor Denniston in Queen Elizabeth hospital in Birmingham. Reluctantly they agreed, but did so as they were baffled by this rare condition. Thankfully Moorfields managed my PIC and I entirely owe my sight to their continued care. I travel to Birmingham twice a year for Prof Denniston to check me over and know that he and Professor Tufail at Moorfields discuss all things PIC when they meet.
Treatment at the moment is Mycophenolate 1000mg twice daily which is holding things at bay, PIC wise. I was at one point having monthly injections (21 in total) and on 80mg of prednisone- which tapering off of was not pleasant at all !! I was shocked by how this affected me - panic attacks, shakes, irritable, snappy, depressed to name but a few of my experiences.
I have come a long way since December 2016 and call this PIC (Poxy Inconvenient Condition) I have been in some dark places emotionally and have no doubt I am still mourning the loss of what vision I had before. It’s funny because I feel as though I have forgotten how I used to see the world and only know how I see the world now; full of blurs, blind spots and wavy lines.
I continue to work full time as a Social Worker and have a very supportive employer. I do use assistive technology and it helps a lot. I am no way as quick at things at what I used to be. I don’t consider myself to have a disability but rather a DIFFERBILITY. I do things my own way and have gotten better at learning my different way of doing things. No I am not winking at you, I am just using my good eye to focus better is something that comes up a lot. I try to stay positive and this isn’t always easy but I like to think I am a half glass full kind of gal ! I still have dark corners with this condition and all that it brings and think that’s ok. I have more light than dark though and appreciate the sight I have and resilience I clearly have in me. My family keep me up and bring light and humour to it, they do their best to understand the impossible at times and help me with this Poxy Inconvenient Condition.
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