Did you get tagged?

If someone in the My Big Fat Scleral Lens facebook group tagged you and linked to this page, it's probably because they think you'd appreciate a little orientation to our group's position on tap water.

For example, you might have posted something like this:

• "I use tap water all the time and i've never had a problem."
• "My eye doctor says rinsing with tap water is fine."
• "Oh brother. I could get hit by a bus this afternoon too."

Anything, in fact, no matter how well intended, that suggests tap water isn't a big deal.

Tap water is a big deal.

You can read more about it here. But in a nutshell:

• tap water introduces the risk of acanthamoeba, which can cause rare but devastating infections
• rinsing and cleaning your lenses after tap water exposure does not eliminate this risk
• there may be special risks associated with scleral lenses because of the way sclerals hold the same fluid against our eye all day
• all the major optometry and ophthalmology professional bodies as well as government health organizations (CDC, FDA, EPA) warn against exposing contact lenses to tap water

Why do we care so much?

Well, we care because we care. But here are some specific reasons why we are aggressive in steering the conversations when tap water comes up:

1. The science is still emerging.

Do you remember when there was a big stink about infections associated with a multipurpose contact lens solution for soft contact users many years ago? The solution was eventually recalled. When outbreaks like that happen, it takes time for the profession, industry and government to figure out what's going on, publish data, and take action. Meantime, people get hurt.

We hear anecdotal reports regularly from doctors in university settings who treat AK (acanthamoeba keratitis) patients and from patients who have experienced AK. It's a frustration that these cases aren't getting published in the medical literature enough, which makes it very hard to track trends. We hope this will change.

2. Scleral lenses have special risks.

Whatever goes in the bowl of the lens gets held against the eye all day long. Many people who wear sclerals used to wear gas perms and had been told that it was okay to rinse gas perms with water. Even gas perm users are now discouraged from rinsing with water, but we believe the risk is higher for scleral lens users because if acanthamoeba is introduced, our lenses will keep our eye exposed to it far longer.

3. My Big Fat Scleral Lens is FULL of high-risk individuals due to factors such as these:

• A wide variety of advanced and rare corneal diseases.
• Multiple corneal transplants.
• Only one functioning eye.
• Living in countries with questionable water sources.
• Living in countries with increased incidence of acanthamoeba infections.

4. Your posts affect other people whether you like it or not.

Easy to say to yourself, "Well, I'm just posting my opinion, I'm not suggesting other people do what I do! People should use their common sense, and talk to their eye doctor!"

All true.

But there's another truth that matters too: Your posts, individually and collectively, influence others' perception of risk. People are influenced every day by what they read in groups. They may, or may not, read additional information and opinions to balance it out. So we are extra vigilant on their behalf, because they don't know what they don't know.

5. Care standards are still catching up with science.

Did you know it takes up to 17 years for scientific discoveries to become part of routine clinical practice?

When it comes to risks with scleral lenses, we feel that we can make a difference by raising awareness and prompting conversations with eye doctors about tap water and acanthamoeba.

"But my [highly qualified] eye doctor says..."

Please understand that we have no desire to judge your doctor's credentials, skills, knowledge or opinions. As mentioned above, standards evolve and at a time like this, it's to be expected that opinions and advice will be all over the map.

We suggest that rather than posting about your doctor's opinion in our group, you engage in dialogue with your eye doctor about the evolving standard for tap water, the reasons for it, and how scleral lens users may be at higher risk. Here's a link for a page you could even print out and discuss with them. They may or may not agree, but the conversations themselves are valuable.

Why pick on this topic in particular?

It's a good question. There are a lot of things we can (and do) engage with as regards safety issues with scleral lenses. Why do we pick on tap water?

Well, it's PREVENTABLE, and also we feel our group has a role to play in education, raising awareness, and in raising the standard of care. Acanthamoeba keratitis strikes very rarely - but when it does, it's devastating. 

You have every right to choose your risks. But be informed and be mindful of how you may influence others' perception of risk.