We recently asked the Living with KC community to describe keratoconus in one word. Here’s a sampling of the responses:
When looking at this feedback, we want you to emphasize that you are not alone in your keratoconus journey. Last month we had the opportunity to attend the first National Keratoconus Foundation’s Family Symposium. During the opening remarks, Program Director Mary Prudden asked the audience if this was the first time they had ever met another person with keratoconus – most people raised their hands.
It was an inspiring event and the day covered many important topics such as managing contact lenses, cross-linking, dry eye and patient empowerment. What we found particularly powerful were the connections attendees made with other people living with keratoconus and their family members.
Even if you have a great support system of family, friends and doctors, there are benefits to connecting with people who understand what it means to have keratoconus. If you or a loved one has keratoconus, we encourage you to seek out KC community forums, advocacy groups and message boards. These are excellent resources that provide information on keratoconus, treatment options and a space for you to build relationships with members of the keratoconus community.