Pellucid Dystrophy

[harker]

Hello all,

I'm 23, and have had KC for about ten years - been wearing RGPs for about six.

Anyway, went to a hospital appointment yesterday for some new lenses, and my (new) consultant took one look at my eyes before declaring that I technically didn't have keratoconus at all - but a sub-type called pellucid dystrophy instead. Basically, rather than a classic cone-shaped protrusion, I have a wider, slightly smile-shaped bulge. My left eye very displays hints of this tendency - but it's quite visible on my right.

Unfortunately, I'm struggling to find much about it online. Perhaps some specialists here can help. Is it the same as pellucid marginal degeneration - which seems to come up alongside the few scant mentions of PD I can find when I search online?

Also, how does it affect, if it all, my long-term prognosis? I'm told the reason I still have quite good vision with glasses (heavy on the ghosting, but very sharp) is due to shape of this particular type of irregularity. Am I likely to lose that over time nonetheless?

Any advice/experiences would be welcome.

[Anne Klepacz]

Hi Harker and welcome to the forum.
I'm not a specialist, but I think from what you say this is the same as PMD. And there are several PMD people who post here, so hopefully they'll see your post. As for the future, I suspect PMD is as unpredictable as KC in how far it develops! The fact that you can still get reasonable vision with glasses after 10 years sounds hopeful.
All the best
Anne

[centurion]

Hi Harker

I was diagnosed with KC about 10 year ago but 5 yrs ago they told me I didn't have KC but PMD (I'm now 43). My understanding is that PD is the same as PMD, just another name.

I still wear glasses and i have good vision ailthough the lenses get slightly thicker each time but with modern technology they are still cool enough to wear. My lenses came from Germany as there is not much demand for these types of specilaist lens in NI.

I am a patient at the Contact Lens Unit at The Royal Victoria Hospital in Belfast as a resul of my condition. They have fitted me with scleral lens and although the lens looks pretty scary they are very comfortable to wear. There was maybe 4 or 5 visits to get the lens fitting right. With the contact lenses in my vision is very good (left 6/5 right 6/6). I was wearing my lens 7 days a week 12 hrs a day but a problem arose that blood vessels were growing into my cornea which can badly affect the sight . As a result my wear time has reduced to 2 days a week. But because I get good vision with my glasses this is not an issue and there is less hassle with cleaning lenses etc.

The doc says that they know very little about PMD and tend to treat it the same as KC as both are very similar. They can only remember 4 patients at the hospital with PMD so I tend to consider myself very special lol.

My last eye check shown a small decline in my vision so I'm kinda hoping its beginning to stabilise but only time will tell. However advances in laser technology have started to treat people with KC with some success although its early doors. I have e-mailed the company who provide the eqpt for the surgery and they say that PMD can be treated just like KC but it depends on the individual circumstances. As it is early the long term affects are unknown but hopeully things are looking bright for us. To find out more about the procedure called Keraflex this is the link to the site


http://www.avedro.com/

Hope this helps

[harker]

Cheers Centurian,

That's reassuring in a lot of ways. My glasses vision is very important to me, as it lets me function professionally without the need to rely on RGPs. Of course, you were diagnosed much later than I, so my eyes have more time to degrade.

I'm guessing, like me, that you make do with the vision from glasses for most tasks, but switch to lenses when you want vision to be both sharp and 'clean'?

Have you every tried any hybrid lenses? While I get very good vision from my RGPs, there's still a noticeable fringe of ghosting. My optometrist suggested that a hybrid might work effectively with the PMD cornea shape.

[centurion]

Hi Harker

Yip I use my glasses for most things as they do the job and I usually just wear my lenses at the weekends. I haven't tried hybrids. My doc tried me with sclerals from the start and as they were comfortable, although I had to build up wear time, they offered excellent vision.

Like most I have been scouring the net for miracle cures and haven't found any but the recent developments in laser surgery same promising and I'm hoping these will continue to move swiftly so that we can all be rid of this scourge. However I always look on the bright side and know there are other people out there who are worse of than me.

My advice is speak to your eye specialist and get him to try all the possible lenses to see which suits you. Like I say scerals are very scary at first because of their size but are surprisingly comfortable.


Keep the faith and you know where I am if you need a chat

[Legy de feral]

Hi Harker,
I am another with PMD, along with keratoconus. My vision was never good and deteriorated sharply during childhood. It stablised during my 20's and early 30's then deteriorated again from about 35.

Everyone is different though and I was much more severe than you at your age.

I found sclerals really great both vision and comfort wise due to their larger size. You may be a suitable candidate for intacs. And I have read somewhere that cross linking may help but I couldn't find anything just now. And, with time, keraflex may prove effective in stopping the progression of PMD. If you do progress later on, larger diameter grafts can correct your sight. Unfortunately, there is an increased risk of rejection. But you may never get to this stage, particulary with all the recent developments.