I'm worried

I am 16 and have recently been diagnosed with keratoconus. I can still see with the aid of my glasses but my vision is slowly getting worse. I had plans to go abroad to study after I graduated from high school but now I don't know if I'll be able to do that, I'm not sure I'll be able to cope with losing my sight and I'm just so scared and worried.

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Re: I'm worried

hi Dee Dee,

my name is Audrey and I am another Peer Advisor for VisionAware. I am sure it was really scary to get your diagnosis and then think of all the ways it will change your life. I have a degenerative disease called Retinitis Pigmentosa and learned I had it when I was 25. I encourage you to learn about your eye condition and about all the available treatments. Keratoconus has some very helpful treatments and as far as I understand, does not usually lead to total blindness. There is so much out there to help us all learn to live with the different levels of vision that we have and it is very encouraging to explore those resources. I was able to continue to work in my career as a nurse-even with my visual impairment. I raised three kids and in fact have traveled internationally too! so even though you may not be able to imagine all you will still be able to do with impaired vision-many people live full and meaningful lives in spite of it!

Try to stay positive and take things one step at a time. Be sure you are seeing the right eye doctor that can advise you of all your options and treatments available. if your vision cannot be corrected with glasses, special contacts, or even surgery...well then you will want to go see a low vision specialist who can teach you to use other devises to maximize your remaining vision.

Here is some important information to check out that may be helpful.

Here is a Personal Story of someone with Keratoconus:

here is info on the National Keratoconus Foundation:

Here is a Message Board you could post on/follow about keratoconus:

There is a large and active on-line support group for Keratoconus-just search for it in Facebook and it will come up. I think you will adjust to this news better if you can learn about it and interact with others who are living with it. Then you will be better prepared to plan for your future. I feel pretty certain that if you still want to travel abroad after graduation, you will be able to! I saw a documentary about a young woman who was completely blind who served in Tibet in the Peace Corps... you will be able to do more than you can ever imagine, believe me! wishing you all the best, Audrey. ademmitt@afb.net

Re: I'm worried

Hi Dee Dee,
Thank you for reaching out to us with your concerns - I am a peer advisor for VisionAware and want to reassure you, as a person who began to lose my eyesight at 15, I can completely understand your fears for your future.
Please be reassured that there are other ways in which you can reach your career goals. I am not sure how much support you have at the moment but one place to explore your options or see what sort of mentoring you may be able to get is with Career Connect =

It is important for you to know that there are many ways to recieve emotional and practical help that will keep you moving in the direction of your goals. For example, it may be that training in other technologies, called assistive technology, could be very beneficial for you. Change is always a bit scary but with good support, you will find alternatives.
If it helps you in anyway,
I am happpy for you to write to me directly Maribel@springstudio.com.au to help you through this challenging time and to offer you further links.

VisionAware has a treasure trove of articles and daily living tips you may like to explore but do get back in touch so we can direct you to more specific articles and professionals in the field that can help you.
Do write soon,

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