Reis-Bucklers Corneal Dystrophy (My Experience of Reis-Bucklers Corneal Dystrophy)

Member Name: gesaje3

Product:	My Experience of Reis-Bucklers Corneal Dystrophy
Date:	01/01/09 (52 review reads)
Rating:

Advantages: None

Disadvantages: Pain

I have suffered from Reis-Bucklers' Dystrophy all my life. I am 49 and my first memory of this condition is after being poked accidently in the eye when I was 4 I was in intense pain and could not open my eyes. I have been told that my maternal great grandfather suffered from this condition, he lived in a small village in Wales before the advent of the NHS. The only relief was to lie in a darkened room and his eye would be bathed in milk, after a number of days he was able to open his eye. My grandmother, aunt and mother, 1 cousin, suffer from this terrible condition. I have 3 daughters and my eldest is the only sufferer. We have all been patients at St Pauls Eye Clinic at the Royal Liverpool Hospital. We hold this Clinic and staff in high regard, Mr Kay and his staff are very knowledgable of this condition. My daughter now 26 has recently suffered one in each eye a month after each other. She woke with these, as you will be aware rapid eye movement during sleep rips the top off previous scars and the whole painful process starts again. She and myself have had erosions 'neatened off' or debraded, this is where doctors use either a scapal and cotton wool bud and take the scar tissue off. The eye is then padded up and antibiotic cream inserted, then rested for 24 hours before pad is taken off. My daughter's last erosion was treated differently by having a contact lense type of dressing inserted over the scar, very sadly this only caused more damage to the delicate skin on her cornea and she spent 24 hours in absolute agony only then to have to have the cornea debraded! She has just recovered having to take 10 days off work. She is pregnant and very worried that she will suffer when trying to look after her baby-and of course the thought that this may be passed onto her baby.
We have not been offered any long term hope with this condition, only to use a lubricant daily and at night to keep the eyes moist. I have been told that flaxseed oil tablets may help and I will try anything to help her and myself.
I have seen many doctors and specialists and have never been told that this condition causes blindness as another reviewer reports. Obviously the scars on the eyes can affected vision after an episode of it.
I would be pleased to hear any further information on this terrible condition. Thank you, Susan

Summary: A painful hereditary eye condition