KC and I am scared

[sarkac]

Hi,
I wanted to reach out for help.
Ever since I have found out about this disease,it have taken a huge emotional toll on me . and I have been beyond depressed, and feelings of helplessness and onliness
Also since my doctors have not been able to tell me the cause of the disease, I have started to become paranoid about every little thing

1) I would be really grateful of someone could clarify if any of the following would affect my KC

-> sports and exercise ( every time i try to exercise my vision gets blurrier and i start panicking thinking that it could be affecting KC)
-> Fasting and diet : I used to fast weekly(18 hours) to keep myself healthy which stopped due to the same blurry vision. Also I am not sure if I am unnecessarily taking vitamin supplements
-> Lack of sleep or stress on eyes
-> RGP : Lots of people have told me to abstain from wearing lenses since the increase the progression of KC

2) Also I would like to know if there is anything I can do to preserve whatever eyesight i have left

-> I know eye rubbing should be stopped and cold compress helps control that!

Would really appreciate some advise here and keep KC as safe as possible !

Thanks
CDS

[Andrew MacLean]

Hello sarkac, and welcome to the forum.

I am sorry to hear that you have keratoconus, and I guess we all know the roller coaster that you are on. so, here comes the first and best bit of advice that anyone will give you in respect of your diagnosis:

Don't Panic!

Lots of people live perfectly normal lives with the same diagnosis.

You do ask some interesting questions. Firstly about sports and exercise. How vigorously do you exercise. There can be many reasons for vision becoming blurred during vigourous exercise but people with keratoconus manage to do all sorts of things. In the membership of the forum there are all manner of sports people ranging from martial arts, skydiving, motor sports, football and other ball games, tennis players ... ... ... the list goes on.

The advice to people with keratoconus who fast is the same as anyone else who fasts for any reason: keep your fluids up. Drink lots of water during your fast.

I think that the general advice about sleep applies to us, too.

Lenses can be a tough one: on the one hand they afford excellent vision and on the other hand there is an implication that they may accelerate the advance of keratoconus. I wore rgp lenses for over twenty years before I needed my first graft, and wear one rgp again now. If rgp lenses become impossible for you to wear, there are all sorts of other lens materials and lens types that you can try. My all time favourite lens was my scleral; it is a huge rigid plastic lens that sits on the white of the eye and vaults over the cornea.

You are right to say that eye rubbing is not recommended for people with keratoconus. I use clinitas soothe when I feel the urge to rub my eyes. You can buy this over the counter or online; it is not medicated but soothes the itchy eye.

Every good wish.

Andrew

[Lynn White]

Hi Sarkac,

OK, lets go through your list!

Cause of keratoconus
The cornea changes shape due to the fact that the collagen fibres that make up your cornea are not as "stiff" as normal. There are many reasons why this can be and are generally related to the biochemistry of your tissue, which is partly a genetic influence. Having said that, the genetic link is not a straight "parent -child" one - its fairly complex and has not been entirely pinned down by researchers yet.

Mechanical trauma, such as eye rubbing, can affect the corneal shape due to the cornea being softer than normal.

Vision can be blurry during exercise because your pulse rate goes up and for keratoconics, the cornea can often "beat" in time to your pulse, again due to it being softer than normal. This is not at all dangerous and will always go back to normal after exercise.

Fasting and diet This will not directly affect keratoconus BUT if you are getting blurry vision it may suggest your blood sugar is low! Too many vitamins can damage your health, so just take one multivitamin a day - or better yet eat a properly balanced diet!

RGP lenses generally do cause some moulding to the cornea but it is not a rule it will cause acceleration. How any contact lens affects the cornea depends greatly on the fit of the lens. Other lenses, as Andrew says, such a sclerals or large diameter lenses which do not bear down on the cornea will cause less effect. There are also soft lenses for keratoconus which do not cause compression in the same way.

Progression The only known method of halting progression is CXL - cross linking. Although I would generally only advise people to heave this done if they show evidence of progression, if the the fear of progression is a real contribution to depression, then this procedure does remove that worry.

The only other advice I would give is to avoid activities that increase the internal pressure of the eye, such as weight lifting and standing on your head. I would also say avoid contact sports and martial arts if you want to be totally careful (as any direct blow to the eye has the potential to change its shape). However, many people with keratoconus do these activities without coming to any harm at all and its all a question of balance!

Please do PM me if you want to discuss this further.

Lynn

[liam82]

The only other advice I would give is to avoid activities that increase the internal pressure of the eye, such as weight lifting and standing on your head.

Hi lynn

Quick question, does using a rowing machine increase the internal eye pressure?

Thanks!

[Lynn White]

Interesting question!

I am not sure it has been measured... but the relationship with weight lifting is more related to the sudden action of lifting the weight and holding ones breath. Rowing motion is smoother, so should not cause the same sort of sudden fluctuation that weight lifting does.

Lynn

[liam82]

Fantastic. Ive just started using the rowing machine in our house, and would be gutted if I had to stop using it!

Thanks

[Ozfiz]

I've started working out on a daily basis , full circuit workout with weights, ball work and treadmill, i haven't had a problem at all with it affecting my vision