Keratoconus Group | Support Community and Blog

Keratoconus tips and advice from people who understand it

Keratoconus tips and advice from people who understand it

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!

Dr. Andrew Morgenstern, OD, FAAO

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

Angela Ospina

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.

Anirban Gupta

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.

Arifzama Mohammed

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

Dr. Arthur Cummings MD, FRCS

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.

Chetna Patel

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

Chris Smith

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.

Christina Linea Sonne

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.

Claire Landini

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

Dawn Rood

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.

Diane Messemer

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

Graham Nichols

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

Gregg Langella

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

Ian Elder

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.

Jane Baxter

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.

Jenny Bryant

Make sure you have spare lenses

Jim Ratto

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

Joanne Peden

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

Judy Toomey

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

Jyotsna Sainju

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

Kainani Merrill

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

Kala Jayasekara

Find the best optometrist and eye doctor that specializes in Keratoconus

Kalanit Lebouvich

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

Kalolo N Tiana

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.

Kelly Joy Fletcher

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!

Linda Lee Pattison

Get a second opinion before getting cornea transplant

Lisa Parkes

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.

Lisa Uhde

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

Louise Buford Burkhead

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.

Louise James Coulson

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.

Louise Ponticello

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

Mayuran Srithampoe

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!!!

Micaela Kharaji

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 .

Michael Winner

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.

Nancy Cabrera

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

Nicholas Pinto

Don’t rub ! Sit on your hands!

Nick Dash

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.

Nicole Fallica

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

Piotr Żołnowski

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.

Ramon Calero

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...

Raquel Anna

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

ReGi John

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

Rhonda Harrison Bonneville

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

Ross Morrison

Don't rub your eyes EVER

Salman Asghar

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.

Sher Misner

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

Sonya Robinson

Have corneal crosslinking as soon as possible.

Dr. Stephen Ebersole, OD

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.

Susie Fraser

Stay strong and get the proper correction

Tracy Monica George

Share to spread awareness!

6 comments:

  1. The importance of finding a specialist in kc is absolutley paramount. You need someone who is well knowledged in their field so they understand YOU and the range of options to suit your particular stage of kc.I had wished I had done so, instead of following the one advice I had recieved from a general Hospital opthamologist when I was 'diagnosed' at aged 18. Please also see multiple specalist of kc to get a definitive diagnosis. As stated above. continue to feed your mind regarding kc. The more you know the better you can understand your own needs and what you require to help you see the best you can. Don't rub your eyes. If you feel the need to do this, combat with necessary eye drops (keep them and take them with you everywhere if you can) to soothe and relieve the need for an itch. Your eyes will thank you for it in the long run.

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  2. This is a good collection of helpful information for patients with keratoconus. Knowing the available treatment options is important. I find most patients do best with scleral contact lenses. Rarely, is surgery needed. As one of the comments stated, surgery should be considered only after all other options are exhausted. A comprehensive overview of keratoconus treatment is available here. https://keratoconusdoctors.com/keratoconus-treatment/

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    Replies
    1. Do you have any specialists you would recommend in Sacramento Ca? Thank you

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  3. does anyone have any specialists they recommend in the sacramento area? thank you

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  4. When sleeping on side don't let your pillow firmly pressed against the side of your face.

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  5. Any advice during driving if I have keratoconus?

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