For individuals and families who are living with keratoconus, it’s imperative to fully understand the diagnosis and receive proper information about potential treatments and next steps.
Effective management options like corneal cross-linking, intacs, and contact lenses are giving patients more control over their condition, but many individuals are still left with serious questions, especially when it comes to insurance and whether they will need life-changing procedures such as corneal transplants.
Here at Living with KC, we understand the urgent need for an inclusive keratoconus community to serve as a resource for patients and their families. You can never have too much information on keratoconus and its impact on your life, and we believe that events are essential to strengthening not only individual knowledge, but also that of the entire community.
It was with these goals in mind– greater patient understanding and empowerment– that the National Keratoconus Foundation began hosting educational symposia in 2018. The first three events were held in Irvine, CA, Ann Arbor, MI, and Chapel Hill, NC, giving patients from different regions the chance to connect, network, and seek professional advice from various eye experts.
One common remark we heard during past symposia was how frustrating it can be to find accurate and relevant information about the condition. With this in mind, the NKCF Symposia were designed to act as an all-in-one resource center, with patient led sessions and workshops being offered alongside presentations on living a full life with keratoconus, including professional and personal considerations.
At the first Keratoconus Family Symposium at UC Irvine Health, many attendees stopped by the Keratoconus Story Alcove to share their personal experience with keratoconus. For Jolene and her family, the keratoconus symposium served as a valuable opportunity not only to share their experience as a multi-generational keratoconus family, but also to gather information on how to best treat their teenage son with the condition.
Below are some of the topics that are typically covered during the KC Family Symposia:
- Overview of Keratoconus: What do we know?
- What’s the Best Contact Lens for Me
- Practical Pointers and Products
- Surgical Considerations for Keratoconus
- Is Cross-Linking Right for You?
- Understanding the Insurance Challenges for Keratoconus Patients
- Emotional Issues of Keratoconus
- Accommodation in School & the Workplace
- Perspectives on Patient Engagement & Empowerment
How to Get Involved
Interested in attending one of these events? More NKCF Keratoconus Family Symposia are coming soon! Follow The National Keratoconus Foundation on Facebook and Instagram, and Living With Keratoconus on Twitter, Facebook, and Instagram, to stay up to date on any upcoming events.
To learn more about these events, or to see highlights and videos from past events, visit the National Keratoconus Foundation Website here: NKCF Family Symposia