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Living with Panuveitis

There are over 200 recognised eye conditions. Some conditions are much rarer than others, many people have more than one condition, and for some, sight loss is only one aspect of another condition altogether.  NB Online spoke with Lorraine Warnock about panuveitis.

1. What are your eye conditions, and how do they affect your sight?   I have chronic bilateral panuveitis, which is an inflammation of the uvea in both of my eyes. I also have fixed and unresponsive pupils, so my level of vision changes continually throughout the day, depending on if it’s too bright or too dark. I have no vision in my right eye, and in my left eye I have a less than three-degree field of central vision. To put that into perspective, somebody without any eye conditions should have about a 190-degree field. For me it’s like looking through a straw. I also have secondary glaucoma and Charles Bonnet syndrome (CBS).

2. Are any of your conditions congenital, and are they related to each other?  None of my eye conditions are congenital but they are all related to each other. Panuveitis and the treatment for it increased the pressure in my eye which led to glaucoma, and the CBS came once I had lost my sight. 

3. How long did it take to get diagnosed?   My diagnosis for panuveitis was incredibly fast. After waking up incredibly light sensitive one morning, I went to the opticians after work, who thought my contact lens had caused an infection. A few days later I was in agony so I went to A&E. 

Initially it was diagnosed anterior uveitis (front of the eye) in my left eye, but as eye drops and injections didn’t work I had a barrage of tests looking for a cause. Ultimately, as every flare up happened in a both eyes and in different areas of the eyes, it was diagnosed as panuveitis. 

The secondary glaucoma in my right eye was diagnosed during a follow-up appointment a few months after a cataract operation but it was too late to save any sight. As soon as I had symptoms in my left eye I attended clinic, but despite having an Ahmed glaucoma valve fitted to reduce the eye's intraocular pressure, I still had significant damage and lost the majority of my vision.  I first remember experiencing CBS while in hospital for a uveitis flare-up. The lady in the bed across from me was floating about the room in her bed. At morning check-ups, I informed my consultant my vision had returned in my right eye after seven years of blindness, to which I was informed I had experienced CBS, and unfortunately, it was not a miracle as I had originally hoped.

4. Have you had any treatments for your conditions?  For panuveitis I am on constant steroid eye drops. When my eyes are relatively free from inflammation I have them four times a day. When I have a flare-up, it’s hourly. I have dilating drops three times a day to stop spasming. I’ve also tried subconjunctival, intraocular and periocular steroid injections and I’ve tried medications designed for other inflammatory illnesses but all have been unsuccessful.  For the glaucoma, I’ve had eye drops, Diamox, cyclodiode laser to my right eye and Ahmed glaucoma valves fitted to both eyes. There is no treatment for CBS.

5. Was it difficult to find out information about your conditions?  No, all of my conditions are very well documented online, plus I have an incredible consultant. I do have numerous problems with going to opticians though. My current prescription is wrong despite it having been changed twice already and after one eye test, the optician insisted on me using a 12x magnifier which I don’t need. 

6. How do your conditions affect you day to day? 

My conditions have changed my life significantly. I no longer go out alone and I do all my shopping online. I can’t drive and don’t work because I have no idea what my vision will be on a day-to-day basis. I also get tired really easily because of my incredibly restricted visual fields and low visual acuities. I do try to do most of the things I used to though, reading, cooking, socialising and going on nights out.

7. Do you know if the conditions affect different people in different ways?  I don’t know anyone with the same conditions as me, so I’m unsure of how it might affect others. 

8. What would you like eye health professionals to know about your conditions that may be helpful when treating other patients? To opticians, I’d say that they should ensure they ask what the patient needs for an accurate prescription to be achieved. It’s important to allow time for vision to adjust between light changes and to have more patience when a patient is deciding if a lens is clearer.

9. Is there any technology that helps you day to day?  I use accessibility, zoom and magnifier features on my phone and I use a Kindle and a magnifier for reading.

10. What's the strangest question you've been asked about your conditions?  I’ve had no strange questions about my conditions, only about my level of sight. When told I’m registered blind, most people can’t understand how I can read, write or even see them. I once told someone that my dog types and reads messages for me. I didn’t have the heart to correct them when they didn’t question my answer! Tags NB Online


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