We asked members of our community for tips and advice for those newly diagnosed with keratoconus. Here is what they had to share:

1. Get a definitive diagnosis from someone that specializes in keratoconus. 2. Get a Pentacam image of your eyes. 3. Get 2-3 opinions prior to a corneal transplant. 4. Go to keratoconusacademy.com and NKCF.org to learn & for up to date information on keratoconus. 5. Learn about Corneal Cross Linking (CXL). 6. Go to sclerallens.org to find the best possible scleral lens optometrist to fit you with scleral lenses and scleral lens information. 7. Corneal transplant ONLY when all other options are not working or vision has declined too much. 8. Consider low vision services earlier than later. 9. DONT RUB YOUR EYES, STOP SMOKING, LUBRICATE! LUBRICATE! LUBRICATE! 10. The professional medical keratoconus community is here to help. Ask us questions!

No matter how hard it is please DON'T SCRATCH YOUR EYES!!!!

The only advice my doctor gave me, never ever rub your eyes. Immidiately go to the doctor if your eye itches. And perform CXL ASAP.

Keep up your doctor appointments once in a quarter. Do not skip even if you feel pretty awesome and feel like no need to visit a doctor.

Do not rub your eyes! Fingers to bone is fine, fingers on soft tissue is not.

Keratoconus is not end of life... And do whatever you wanted to do, just Never Give up.... you will find a way to do it and end will be super satisfactory.

You have to see the right person otherwise you might not get the right help

Fonts makes a big difference when reading books. Lights comes in so many colors, find a one that fits you. Sunglasses can make a big difference on days with headaches. Sunglasses can be made so it takes out colors that are hard on you, like blue.

Get CXL done as soon as possible. You can't get back what you have lost. If things dont seem right then get a second opinion.

Do what works for you! Opinions are great but you know you.

Keratoconus does not make you legally blind. It distorts vision. Not curable but highly treatable. Find a good team of medical professionals who will give you options.

Don't panic. There's lots of help and options to help you readjust to your personal changing landscape. Together we overcome all adversity.

Find a great contact fitter and cornea specialist. Listen to their advice

Don't be afraid to see other doctors I saw three doctors before I was happy also what helped me stay positive was hearing from other people who have KC

Give your eyes time to rest and breathe without your lenses in, daily. If your eyes hurt, do not continue wearing your lenses, give your eyes a break - they are the only eyes you can get! Find the most experienced kc optom you can. Be kind to yourself.

Have patience. Keratoconus is crap and there are days you may have a good cry... but things are typically manageable. Finding the right solutions may take time, especially in the early stages when the cornea is changing. Some days you'll feel frustrated and out of control... accept that things are 'different' now but always find a moment to be thankful for what vision you have. Things could be worse but with the right support and care, you'll be ok. Promise.

Make sure you have spare lenses

Don't let fear of how your eyes might deteriorate in the future stop you living life wholly today

Don't wait to seek treatment. Better to get your eyes fixed now then wait till you need a cornea transplant. Keep searching till you find the right Dr for you and your condition. Join a support group

Please do C3R (crosslinking) asap it will stop the progression of keratoconus

Don't wait for treatment. It will never get better on its own.

Be strong. Now u see the word different. You are unique in your own way

Find the best optometrist and eye doctor that specializes in Keratoconus

It can progress. Pregnancy can speed up this progression. Get treatment as soon as possible.

Just be the same person you were before you were diagnosed... carry on the way you were living and don't let it hold your dreams back... of course get check ups, and the correct treatment... but Just carry on living life and never doubt that keratoconus will hold you back... there's so much in life to still do.

I was diagnosed 20 years ago. It was mild “don’t worry about it”. It was not good advice! It’s now moderate. Read, read, read about KC. Find a cornea specialist. Mine is at a teaching hospital. Learn about all the terminology so you know what the doctor is talking about. Write down your questions for your next visit. If your doctor isn’t familiar with KC, find someone who is. Read, read, read as much as you can about KC! Keep reading this website. IGNORE the mean people. Keep asking questions!

Get a second opinion before getting cornea transplant

If I met someone who was just recently diagnosed with Keratoconus I would say... Give yourself time to understand what it is and remember you are not alone. Live life to its fullest. See all you can see and regret nothing. I’ve almost done it all and have laid down some great ground work so no one else will have to be the guinea pig.

Adapt but don't give in. Find a patient great eye provider that works with you to get corrective devices.

ind the best contact lens fitter, don’t rub those eyes, expect they will change. I was diagnosed 35/years ago. Try to find a great teaching hospital.

Get CXL pronto. Find a specialist that performs it, don't wait. Don't worry, it will be okay. Don't rub your eyes anymore!!!!!!!!!!!!' make sure your children don't either. If they do, get some sort of allergy eye treatment.

Find the right doctor (corneal specialist with experience). Follow up and monitor specially if u notice change. Stay strong.

Find a good optometrist that specializes in KC when lenses are fitted correctly it makes a huge difference . Stay patient and strong throughout your journey because you'll have this for the rest of your life so make the best of everything and most importantly don't RUB YOUR EYES!!!

There are many different levels of seriousness of KC , but remember that none of these are terminal. It isn’t always easy , especially if you’re one with a serious condition , but stay grateful , help others , and stay connected .

Collect $1 each time people suggest you should use frame glasses instead of using contacts. You will be rich in no time!!! also, don’t worry, keratoconus has many treatments and you won’t go black blind for it.

My advice would be to take a deep breath and relax. The world isn't ending. .

Don’t rub ! Sit on your hands!

Start a money jar. Every time someone says "Why don't you just wear glasses?" or some other oblivious comment, put something in it. At the end of that first year take that money and do something good with it. whatever makes you feel good. Gain a positive from all those negatives. Much love.on your journey.

Never rub your eyes, find good clinic and optometrist, undergo crosslinking ASAP, get proper lenses/glasses, fuck KC

The more you learn, the better informed you will be and it will bring you peace. There are so many options now compared to those I had 33 years ago. At times I felt alone and somewhat down, but there are many solutions and this group offers excellent support. Keratoconus does not define you.

That we all have good and bad days but never give up, and don’t forget that we are all here for each other to ask questions, to vent too, even though we all have something in common it affects us all differently...

Hang in there! Its an endless marathon. But more to train yourself to beat all odds

Stay current with the group. It will help you stay sane!

Don't rub your eyes! take very good care of them and there the only two eyes you'll ever have.

Don't rub your eyes EVER

If you keep on top of it and do what works best for you then everything works out in the end. I was diagnosed in 2002 and have kept up with appointments and testing. I now have glasses that work awesome and I can work and still drive at day and at night. It is no longer progressing.

Breathe. Find a good specialist. Get connected with people who understand or want to understand.

Have corneal crosslinking as soon as possible.

Look into epi-off CXL, sooner rather than later, to halt progression and retain as much vision and cornea health as you can with your cornea specialists and then keep scleral lenses in mind for when and if needed for better vision.