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A Welcome Packet for My Keratoconus Family

In the past 7 years since I was diagnosed with keratoconus, I started to join different online groups and meet other people with the condition. I often relive the early frustration and fear of those newly diagnosed. It’s scary: the changes in vision come on quickly and it can be quite disruptive to one’s work and personal life. Additionally, struggles with finding the right lenses or making a decision about surgical procedures can also add extra stress. And don’t get me started about health insurance.

Keidra Chaney - A welcome packet for my keratoconus family

I feel like I am learning and relearning about this condition every day, and I can’t say my frustration is gone, I just manage it better. I am starting to figure out how to live and thrive with this condition and it gets better each day.

I wanted to write a short post with some of the things I learned from dealing with this condition; the things I wish I could have gotten in a “welcome packet” when I first got my diagnosis. I don’t even know if everything I’ve learned is the “right” answer. Like I said, I am still learning, but I thought I’d pass what I have learned already to the new members of the keratoconus family.

First of all, it’s crucial to find the right doctor for you. I’m lucky, I live in a big city and I was able to find both an ophthalmologist and cornea specialist to give me my options.It’s really important to ask your doctor if they have experience treating keratoconus and what kind of treatments they offer: corneal grafts, crosslinking, INTAC lenses, scleral lenses, etc. When I first got diagnosed, I had some friends refer me to their doctors that specialized in LASIK or in other eye disorder and honestly, that sidetracking may just slow you down.

Asking specifically if they treat keratoconus is super important for your eye health and your time.

Even that’s not always perfect. My ophthalmologist is familiar with keratoconus but there were things about day-to-day care that they didn’t even know so I struggled a lot at first with issues of eye strain, inflammation, photophobia, and later, night vision . I had to push back on some some of her input as a patient. (It’s super important to trust your doctor but also YOUR OWN BODY/EYE, if you know something feels wrong, speak up.) However, they knew their own limits referred me to a doctor who specialized in cornea issues, specifically keratoconus, for extra treatment and also gave me information about support groups to join (which I will talk about later)

Also, it’s important to find a support community (or several!) There will be times where having keratoconus will make you feel like crap. I’ve written a lot about how the condition has affected me at work and personally. There will be friends that have sympathy and then there will be (well-meaning) friends that you may want to punch in the face because you feel like they are belittling your issues or not really listening. This is where a support group can be really helpful.

As with any medical condition, keratoconus affects people differently. Some people’s condition progresses rapidly, other people more slowly, over many years. Some people’s transplant experience is easy as pie, others not so much. Some people find the perfect fitting lens on the first try, other people have multiple re-fittings before they find the one. Issues like pre-existing medical conditions, age, access to care, and financial issues also play a role in how you experience /cope with this condition. All of this is valid. The great thing about these groups is that you’ll find a variety of people having different experiences but still going through the same thing, so you’re not just finding people to commiserate with but also practical advice on how to handle work, travel, money, etc. I am a fan of the Keratoconus GB Forum on Facebook (It’s based in the UK but still helpful if you are not from there), the Keratoconus Group Blog, and the Keratoconus Foundation website. And there’s more, just ask me.

Look at all kinds of different treatments. The right doctor will tell you this. There is a lot out there. Collagen Crosslinking is an option for those in the earlier stages, there are also INTACS, Semi Soft & RGP’s [Rigid Gas Permeable] contact lenses, and scleral contact lenses for more advanced keratoconus. (I’m using sclerals currently and it’s really made a great difference in my day to day vision.)All this to say, there’s more options than just a corneal graft, so the right doctor will investigate them all, and it’s also important to go for a second or third opinion if you need to. Again, the Keratoconus Foundation and support groups can help point you in the right direction and put your mind at ease.

Finally, be honest with yourself and the people that love you about what is going on with you and what help you need. This condition throws a lot of us for a loop because it’s a rare disorder that doesn’t make a whole lot of sense, and people can’t “see” what’s wrong. So many of us struggle with the shame or fear of being different that who we were and asking for a bit more help when we need it. But that help can change your life. Once I started being more honest about what was going on friends and loved ones came out of the woodwork with help and support. It made me feel silly for going it alone in those early years, so the sooner you can do it the better.

You got this! You’re not alone. Welcome to the KC fam. We’re not here for the happiest of reasons, but we can still be happy!

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