UK Keratoconus Self-Help and Support Association

Hi Everyone,

This is my first time on here. I have recently been diagnosed as "Pellucid Marginal Degeneration" which is often mistaken for "Keratoconus".

As far as I am aware the corneal thins at the bottom part of the eye where Keratoconus bulges out in the middle causing Distortion which is a symptom of Pellucid Marginal Degeneration.

Unfortunately there is not a lot of information on the internet as it so rare but was wondering if someone on here may be able to help and has any information.

As I have been to seen the Specialist in London but was not very successful and rude unfortunately. Now specialist in Jersey is referring me to Southampton Hospital for second opinion and hopefully has some information.

It is pretty scary and feel for any one in who has a rare eye condition and finds it difficult to see every day to day also not having the information to support.

Unfortunately it is increasingly difficult having finally found my dream job 2 years ago as IT Analyst and now unable to see very well with employers not being supportive towards my condition which is frustrating and upsetting at the same time.

I hope to meet people and hope to gains some friends from this site in simlar conditions.

Kind Regards

Tiny Tash

Hello Tash, and welcome to the forum. I think we have other people who post here and have PMD.

In general, please take heart from the knowledge that you are not alone, either on Jersey with an eye condition, or with PMD/KC. I see that you are currently wearing glasses; had anyone mentioned the possibility of wearing contact lenses as a way to provide you with better eyesight for longer?

All the best

Andrew

PMD can be very hard to fit with the normal contact lenses for Keratoconus becuase the irregular part of the cornea is so low on the margin of the cornea, generaly towards the lower eye lid. This means that a contact lens is often left sitting on or the lower edge sitting proud the a contact lens gwets pushed around by the lower eye lid.

The good news is that In recent years contact lenses have been made with more flexible design peramaters so they are more suitable for irregular corneas rather than just keratoconic corneas. Therefore there is no harm in getting a second opinion to confirm the diagnoses and determine if glasses will still be OK or if you need to try contact lenses.

I don't have PMD but KC has returned in the host cornea towards the outer edge and pulling my grafts out of shape. I became intollerant of RGP contact lenses because of the way they say on the margin of the cornea. The lenses that work for me are Kerasoft IC which has a sector management system to help with situations such as PMD, there are also some RGP lenses that also have a sector management on the lens edge which helps 'tuck' the lens in on cases such as PMD and then flatten where required.

Just wanted to say hi and welcome tot he forums, Ia m sure you will altho you dont have KC find a lot of useful information here and supportive people to help you along your journey.

Lea
xox

Hi Andrew,

Yes that is correct I do wear glasses currently but working a full day I become very distorted and Glasses do not help much. They have tested me to see if I can have contacts but unfortunately my eyes have no tear ducts so they said it is impossible for me to go for contacts and it will become irritated.

Kind Regards

Tiny Tash

Ouch! I have dry eye and know how hard it can be to get comfortable lens wear. I use an eye bag nightly. This stimulates tear production, and artificial tears by day.

When you get your appointment to the hospital in Southampton, ask again about the potential suitability of newer contact lens types.

Andrew