Episode Transcript
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(00:05):
Welcome to episode 25 of the Clearly Casey podcast, featuring information about life with keratoconus.
I'm your host, Dr.
Melissa Barnett, and today is International Women's Day.
.999So it's a special honor to be joined by Ash, who is a social media influencer and leading advocate for Keratoconus.
(00:26):
.999Welcome Ash.
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Hi Melissa.
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It's so amazing to be here with you today.
I'm so excited to chat.
I'm so excited to have you.
.999Tell us a little bit about yourself and your struggles leading up to your diagnosis of Keratoconus.
I am 27 years old, and I was diagnosed six years ago when I was 21, I had just had my first baby whenever things really progressed, keratoconus progression.
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the struggle to get diagnosed was, probably one of the hardest things in my life.
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And that's what I do on social media is to get the word out there about keratoconus.
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So people know what to look for and when they're going to the doctor and they know something's wrong, maybe mention keratoconus and hopefully catch keratoconus before you end up with such a severe case like myself.
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Wow.
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That's such an inspiring story.
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So prior to your pregnancy, did you have eye exams? Did you wear glasses or contact lenses at all? Yeah.
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Great question.
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So I did.
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I have a piece right here.
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Of course people can't see it at home.
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This was my last pair of glasses, just the lens.
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Yeah.
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I wore glasses for years and it got to the point where my glasses weren't working.
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And I had gone to an eye doctor and I was like, Hey, I need a new pair of glasses.
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I was in high school.
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I was like, I can't see the board.
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I'm having trouble driving.
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And he's like, well, we'll get you a new script and we'll get you on your way.
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And I remember being so excited when that script came in, I was going to be able to see, and I put these glasses on and it didn't make much of a difference.
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And I said that to my doctor, I was like, Hey, I don't know if I need to like wear these longer, but I don't really see much of a difference.
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And he was like, well, you have to wear your glasses.
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For your glasses to work and that was the start of my keratoconus journey.
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I kept going to doctors because I was having trouble seeing, it was getting worse slowly and I was just getting really stressed out.
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At one point I had a corneal tear and I went to an emergency appointment with some random optometrist because my eye hurt.
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I got in with him same day and he looks at me I was at the time wearing, I don't even know if I should say this on this right here.
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Oh, You can share.
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Uh, this is a big no no.
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Nobody do this.
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I was wearing a friend of mine's contacts.
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We weren't sharing.
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She never wore them before.
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Don't do this.
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Correct.
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Don't do that.
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But I could see, I could see guys.
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And I was like, wow, this is just where I need it.
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I just need a, you know, And so I had been wearing them, but I had no proper training on contacts because I never had an optometrist sit down with me and be like, this is how you do it.
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This is what you're supposed to do.
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Someone just handed me a pair.
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And I was like, this is great.
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That caused a corneal tear because at the time, I didn't know I had keratoconus.
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However, keratoconus causes thinning of your cornea, as we all know.
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And I guess at that point, my cornea was quite thin and I had something rubbing on it all the time.
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And, that led me to getting a corneal scar.
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And still, Keratoconus was not caught.
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This was longer than six years ago, this was almost ten years ago now, maybe Keratoconus wasn't talked about more, I'm not sure, but I don't know.
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I think you brought up some great points there.
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One, don't wear someone else's contact lenses.
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Yeah.
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Don't do that.
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Don't do that.
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That's awful.
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Uh, contact lenses.
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It's important to see your eye doctor, to be fit.
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We evaluate the health of the eyes.
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It's not just the vision and the comfort, but we're actually evaluating your ocular physiology to make sure that the contact lenses are the right ones for you.
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But also just the important point of the timing of your diagnosis.
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So with our patients, that's really common in the late teens or early twenties for things to be changing.
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So that's a good call out to all the practitioners out there.
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If there are changing prescriptions, changing glasses or contact lenses, or things just aren't right, or the vision is not a crisp and clear.
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2020.
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It's kind of blurry.
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Then we should all be thinking of keratoconus.
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So I'm trying to educate everyone that we should be looking for keratoconus in every single patient and ruling it out, just like we should be ruling out dry eye in every single patient.
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And hopefully awareness is getting better, but I still think that we have.
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Jointly, the opportunity to share that we should be evaluating and thinking about keratoconus for all of our patients.
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Absolutely.
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Thank you.
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Thanks for sharing that part of your story.
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Now, I'm so interested in what motivated you to start sharing your experience online with others.
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When I finally got this diagnosis, I went into my doctor's office and it had progressed to the point where my visual acuity was hand motion and going into the office, I got lost going in because I couldn't see anything and I knew something was wrong.
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I just didn't know what so sitting down and getting this keratoconus diagnosis I felt great peace because I had answers.
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I knew what was going on.
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I knew I wasn't crazy It wasn't all in my head, but I also felt a great deal of loneliness and confusion.
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I wanted to connect with somebody, I had never heard of care to what care to who and to sit down and just be like, I don't know anything about this.
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I want to know more.
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I want to sit down with somebody who knows what's going on and just talk about this.
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Like, this is crazy.
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Hard plastic contacts going in my eye.
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Like what? And so I had a social media, platform for my dog.
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Cause I am a dog person.
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Her name is Demi.
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That's where Demi the vlog dog came from.
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And I was like, you know what? These contacts are so cool and I think Keratoconus is such an interesting thing.
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I want to talk about this.
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So I made a post.
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I was like, maybe this could help somebody.
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Maybe I'll find somebody like me.
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And who knows? Maybe it'll help somebody get a diagnosis.
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And so I started sharing a little bit about scleral lenses and Keratoconus and It took off.
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People were messaging me saying me too.
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Oh my gosh, I've never met somebody who wears these contacts too.
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Or I've never met somebody who needed corneal cross linking too.
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And we were able to connect and kind of hold each other's hands through this process.
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Yeah, that's how I got to social media and it just, Took off from there.
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I never, I never shut up about it since so well, you're doing such great work sharing your story and really helping others.
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And I know many of my patients have never met anyone else with keratoconus and it's amazing.
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So the National Keratoconus Foundation, of course, is a wonderful resource to connect all of us.
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And you sharing your story with others, it really helps to make everyone feel like we're all part of this community.
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We're not alone.
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And especially for my patients, I never want them to feel alone in their journey because being diagnosed with keratoconus and everything that follows is quite a journey.
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It is.
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Yes.
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I understand that you have a nonprofit organization.
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Tell us a little bit more about that.
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Yes.
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She's brand new.
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I just finally got my EIN and it's called the Angel Eyes Foundation.
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My goal, I know it's going to take a while probably to be able to do this, but I just want to help as many people as I can, even if it just ends up being one person Knowing I did that will be very fulfilling to me.
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My goal with this foundation is to provide financial support to those who need scleral lenses, any specialty lenses or related procedures, corneal cross linking, Intax, things like that.
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With my social media, I get a lot of comments from people, inboxes, people saying, I want these, I need these, I'm living my life not to the fullest because I can't afford these lenses or I need CXL my visions.
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Declining and they just can't afford it.
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And that's so heartbreaking.
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I've been fortunate enough.
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I have a platform.
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I've been able to crowdfund for, my own pair a couple of years ago.
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And then this year a company reached out to me and was like, we'll pay for them.
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I understand that it's such a privilege and not everybody can do that.
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And I feel like it would be wrong of me to call myself an advocate and to sit here and take from a community and not give back.
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So that's why I've started this.
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It's very hard.
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It's the hardest thing I've ever done.
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But I'm determined and persistence will get me to where I want to be.
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Yeah, that's just a little bit about it.
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Oh, that's so wonderful.
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I have so many questions.
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First of all, how can we support this? So say we want to donate to the Angel Eyes Foundation, where do we go? That's a great question.
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As I said, she's brand new.
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I'm applying for 501c3 status next week.
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So that'll be great.
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After I get that application and I get approved, then I plan to get the website up.
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So she's legally recognized as a nonprofit, but we're not quite ready.
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Once it is up, I've already bought the domain.
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It's the website is called www.
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theangeleyesfoundation.
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org.
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And You'll be able to find a donation link and hopefully be able to donate there that is wonderful.
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And have you reached out to different manufacturers of different lenses to get support yet? That is a wonderful, idea.
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There's a lot I want to do.
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Starting out, there's just so much that needs to be done.
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Obviously that is a great thing to do and I will be doing.
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I think it's very important that I get the ball rolling and then.
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I talk about it.
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Everybody who hears about it.
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Just talk about it.
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Get the word out that it's going to exist and hopefully it'll fall into the laps.
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Well, we have a great community.
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So all the specialty labs out there, take a listen and support and we'll definitely share the word through the national as well.
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It is so wonderful because specialty lenses and scleral lenses can really change lives.
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I truly believe that they not only change the life of the patient, the person, the individual, but also their family.
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So many of my patients, They're able to work or go to school or do whatever they want to do with these special lenses, and it not only changes families, it changes communities and changes lives, and it's absolutely incredible.
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It's such an honor for me to be able to be involved in this and teach other doctors how to fit lenses and it's definitely one of my favorite things that I do and I talk about lenses quite a bit, too.
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I think there's something so beautiful when you meet a practitioner who is so passionate about what they're doing.
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I still remember the doctor the same day that I was diagnosed.
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I tried on my first pair of scleral lenses and her name was Dr.
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Reyes in San Antonio, Texas.
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If you hear this, I love you so much.
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Thank you.
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I will never forget looking up and seeing her face being the first face I seen.
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And just us staring into each other's eyes and we both cried like it's such a special moment to see the world again and I'm, just incredibly thankful for everybody who takes the time to learn because I know it has got to be a hard thing to Fit somebody with such specialty lenses, especially such complex cases.
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And I'm just so grateful for everything you guys all do, especially people who are advocating people who are spreading the word about Keratoconus, National Keratoconus Foundation.
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I love you guys so, so much.
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I always tell patients when they reach out, they're like, do you know anything about this? This, this, I always refer them to the National Keratoconus Foundation because that is where you're going to get up to date research.
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You can find out information.
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And there's, I believe.
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Just a plethora of educational resources there.
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Oh, yes, that, that is correct.
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And KCF is so incredibly helpful.
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And I will tell you that even though I've been fitting scleral lenses for many, many years, I still cry.
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I cry too.
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We all cry together.
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And then it's like my 8am and then I just I'm like, Oh, I've been teary the whole day.
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These are so great.
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You can see.
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No, yeah, we're right there with you.
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So what is the message that you want to share with everyone? When you talk on social media, if you could have three key points, what would you share with everyone? or you can go into as many as you want, but maybe three, maybe three.
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Okay.
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I think number one, I don't care who you are.
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If you are able to see your eye doctor at least once a year, please, please.
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Two, if you are diagnosed with keratoconus, please.
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Don't give up and follow your eye doctor's instructions.
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I get a lot of people that reach out and they say, I need this, this, or this, and I'm so scared.
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I don't want to do it.
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And they asked me my opinion.
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I'm like, I can't give you my opinion.
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I'm not an eye doctor.
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They know what's best for you.
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You need to listen.
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I know it's scary, but they're not going to steer you the wrong way.
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Three, talk about it.
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Talk about keratoconus, talk about the importance of regular eye exams.
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There's so many.
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Eye conditions out there.
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And so many of them, if caught early can lead to a better outcome.
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You don't really realize the importance of your vision until you're losing it.
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And once it gets to a certain point, sometimes you can't get that back.
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And that's scary to me.
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And just don't lose hope.
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You know, always help others when you can help push others, you got me.
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You're doing great.
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You're so sweet.
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Don't miss the value of being someone's hand, to hold, you may feel like you're alone.
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But you're not.
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Oh, that was so wonderful and such great advice.
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I completely agree.
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The importance of an eye exam is so critical because we can find more than 270 diseases in the eye.
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And eye exams can start as early as six months of age.
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We do everything objectively.
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And for all the practitioners out there, please be thinking about keratoconus in every single exam and making sure That if there are prescription changes, glasses, contact lenses, vision's not clear enough to be thinking of and evaluating for keratoconus.
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So, Ash, thank you so much for inspiring us and for all the work that you do, and thank you for joining us on the Clearly KC podcast for all of our listeners.
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Thank you so much for joining us on Clearly KC.
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Please listen to all the episodes of the Clearly KC podcast on Podbean or your favorite podcast app.
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To subscribe and get future episodes and Ash, we're going to be in touch.
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I'm going to help you with your plans.
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Can't wait to do that.
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For now, I'm Dr.
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Melissa Barnett.
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See you next time on Clearly Casey.