A letter that I sent to the National Keratoconus Foundation about something that’s been on my mind lately.
My name is Keidra Chaney, I am a Keratoconus patient and proud donor to the National Keratoconus Foundation. I’d like to thank NKCF for your continuing work in raising greater awareness and understanding of Keratoconus for doctors, patients and caregivers. Your organization has been a valuable resource for me in my past 11 years as a KC patient and a continuing source of support and education. I’m sending this email as a supporter of NKCF and a communications professional, with the hope that my comments will provide insight from a patient and communicator that will help your organization address the sometimes-unseen needs of KC patients and our loved ones.
For the past decade as a KC patient, I’ve experienced the challenges of maintaining a career and active daily life while navigating treatment options. As a communications professional primarily working on computers, I’ve struggled with workplaces that neglect to provide sufficient accommodations to those who disclose their Keratoconus diagnosis, and I’ve experienced the financial burdens that arise when insurance companies that don’t fully cover needed Keratoconus treatment options. As a participant in several online Keratoconus support groups recommended by NKCF, I’ve witnessed similar challenges and frustrations from my peers.
Over the years, I’ve used NKCF’s resources to help me navigate living with Keratoconus and have found them invaluable.I’ve noticed that much of the framing of NKCF’s patient stories and ambassador programs focuses primarily on early diagnosis of young children or celebrities/high-profile athletes such as Tommy Pham and Gabby Chaves (all important stories!).
I believe that this focus — while encouraging for those newly diagnosed and inspirational for caretakers — often overlooks the complex financial, logistical and social barriers faced by a large percentage of Keratoconus patients in the United States. Professional athletes in particular have more access to state-of-the-art medical care and financial means to afford treatment, which many Keratoconus patients in the United States don’t always enjoy. One of NKCF’s own studies acknowledges the financial costs of lifetime management of Keratoconous. These financial and logistical barriers can be as much of a disruption to patients as Keratoconus itself and are a significant part of what daily life with keratoconus entails.
Moreover, a recent study from Save Sight Institute Australia has indicated that while Keratoconus does not cause blindness for many who have it, the disruption to daily life is equivalent to severe vision loss. From the study:
“Keratoconus typically affects students and people in financially active years, whereas retinal diseases such as AMD primarily have an onset in old age. While the patients with keratoconus may have good visual acuity, the quality of vision may be poor. Keratoconus is chronic and progressive in nature, contact lens wear or corneal transplantation to achieve improvements in vision may be problematic and have QoL impacts. (Kandel, Nguyen 2021)”
With this in mind, I ask NCKR to consider featuring a more diverse selection of ambassadors and prioritizing patient stories that speak more directly to the financial and structural barriers faced by those who live with Keratoconus, particularly those whose diagnosis may occur later in life, and patients who are investigating treatment options while balancing vision-dependent challenges to schooling, work and daily tasks. These real-life stories and the lessons learned from them can be just as inspirational and validating as celebrities for those of us living with Keratoconus.
Thank you for your time and your consideration.