keratoconus- finding the right contact lens fitter in the USA

New to Keratoconus? Finding the right contact lens fitter…

Living in the USA with keratoconus? 
If you are newly diagnosed, or have been diagnosed for a while, one of the most important tasks is to find the right contact lens fitter for you. Keratoconus is quite  rare  (1 in 500 have it) , not every contact lens fitter knows how to deal with the problems we have when things don’t go according to plan. I had tried RGP lenses and was not comfortable with lenses at all and just gave up, because even though I could barely drive with glasses, contact lenses made me go crazy after 8 hours.
My doctor told me that I had a disease, and I needed to realize that sometimes lenses won’t be comfortable. After a few years, and was about to move to a completely different part of the country, I thought about trying again. I tracked down a surgeon who had done thousands of transplants for KC patients over the years, and I asked him for advice for finding a doctor after I moved.
Here is his advice. It worked for me, it can work for you.
 1. Call a bunch of Optometry shops in the region you are in. Not just local, but around. Tell them you have Keratoconus and that you are looking for a surgeon with experience with KC patients. Your goal is that you hear the same name multiple times.  
2. This will be an Ophthalmologist who does transplants on corneas. You aren’t looking for a transplant, but for someone who knows what they are doing. Make an appointment with them to review your case. It might involve a good distance of travelling. It will be worth it!
 3. The Ophthalmologist will review your case and let you know where you stand in the progression of the disease. Most of the time, we just need contact lenses, and that is the first step of treatment. Collagen cross linking or CXL may also be an option (not yet FDA approved, but there are trials)  
4. Ask them who they know to fit contact lenses for Keratoconus patients. This will be an Optometrist. They can’t just specialize with only KC patients, because there are not enough of us. They will be just a regular Optometrist, but have a good number of patients. Again, it might not be in your city. It will be worth the time.
 5. Make an appointment! Once you are there, make sure you tell them what is comfortable, & what isn’t. KC lenses are special ordered and produced, one of a kind. So don’t be surprised that you might have to wait a while for them to come, and they might be expensive. 
6. The important thing is to speak up when there is a problem. Most of the time if your fitter changes the fit slightly and they reorder lenses, they will replace them for free until you get the right fit.
The right lens is the type that fits and feels comfortable. There are a lot of different options such as RGP, hybrids and sclerals, and there are more every year. Many of us have gone through uncomfortable fits, and we’re told that just is the best that can be done because of the disease. Sometimes that is true, and it’s just time to move onto a transplant – but many times it’s not true. The doctor just doesn’t have the experience to know better, and they don’t tell you that someone else might do a better job.
Scott Butler, Kansas, USA
This is great solid advice from Scott, and valuable to anyone with KC wherever you are. Always check out the credentials of the doctor or Optom you are sent to, even in the UK through the NHS- do they really know about keratoconus? Always ask lost of questions, and take notes too.

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