Hello Keratoconus: The Maria Hitchins story
Krysta Anderson, Lifestyle Writer
"What would you do if one day you couldn't recognise your child's face?" These are the words of Maria Hitchins, who one day plans to write her autobiography, chronicling her journey with keratoconus.
From fashionista, presenter and dancer to choreographer, cultural enthusiast and now producer, when it comes to arts and culture, you name it, she went and conquered. Little did anyone know that she was walking around with this life-changing disease.
According to Hitchins, keratoconus basically causes the cornea of the eye to take on a cone shape, which then distorts the vision.
She first realised she had issues with her vision a few years ago while pursuing her master's at the University of the West Indies, Mona campus. "I had trouble seeing things that were at a distance. Whenever I had seminar presentations, I had to know my work thoroughly to avoid reading from my laptop because that meant I would have had my face buried in the screen. All my Microsoft documents are defaulted to be viewed at size 150, anything smaller would have me squinting and bucking the screen with my forehead," she recalled to Outlook.
This began to affect her everyday life, especially when she was picking up her daughter at school. "I had no idea which child was mine as keratoconus makes it difficult to distinguish facial details while standing at her classroom door. But I simply called her name and then followed her voice when she responded, as well as the kids could shout "Milan, your mommy is here" and without knowing it, they assist me."
She got prescription glasses, but after two pairs, they just didn't seem to make a difference. Eventually, it got to a point where driving at night was extremely treacherous. That was when she suspected that something serious was at play.
"Approximately five years ago, I visited an ophthalmologist who took some measurements of my corneas and, based on the results, came to the conclusion that I was suffering from keratoconus. At that point, I said kera-what? He then wrote it down on a paper and told me to Google it," she revealed.
Almost a year passed before she returned, asking what she could do to address the situation. Potential treatments such as cross-linking, Intacs, among other procedures that were being tested in a few countries, were ruled out. One of the challenges she faced was that the treatments were not FDA (Food and Drug Administration)-approved, so they were difficult to access. She then offered her right eye, which was worse than her left, as a 'guinea pig'. "I went to the Cornea and Laser Eye Institute operated by Dr Peter Hersh in Tea Neck, New Jersey, where two years ago I did the experimental corneal collagen cross-linking. It was very costly, and was a lengthy procedure, one which involved dilating the pupil, having your eyelids pinned open so you couldn't blink, so you are forced to stare at a beam of light for a very long time."
The first night, post treatment was very painful, she recalled to Outlook. After being asked to follow doctors orders and take pain meds, she didn't. However, by the following day, all pain had subsided. Since then, she has returned for several post operation tests, all of which have been with great results.
She declared, "Importantly though, I didn't just take their word, but had them email me all of my results, which I passed on to my doctors in Jamaica to scrutinise and, after doing their own examinations, my local doctors have agreed that my cornea now appears to have been stabilised, with a slight improvement in vision. Still, I am past the stage where glasses and contacts can assist."
There are other treatments such as intacs which is a micro thin prescription insert that helps to flatten the cornea back into its normal shape. Treatment depends on how the disease has progressed, hard lens can also improve some keratoconus sufferers' vision.
So for now she has to live with this disease, "Unless I do a cornea transplant, then keratoconus will always be my shadow. In fact, there have been cases where individuals, transplanted corneas also begin to cone, just thinking about it makes me uneasy. Hopefully, I will never need that option," she confessed.
This illness, she admitted, has not slowed her down at all. In fact, if anything, it has been full speed ahead in accomplishing all that needs to be done on her checklist. Currently wrapping up producing duties for KFC's On the Verge TV talent competition show and turning in her thesis for her Philosophy Cultural Studies master's programme in September, her active involvement in the performing arts whether as a dancer, choreographer, event curator or other positions, continues to grow - moved by her country's rich creative arts culture.
She also recently received news that two courses she had previously proposed to be taught at Jamaica School of Dance at the Edna Manley College for the Visual and Performing Arts have been accepted by the institution and have been accredited at all levels. This, for Hitchins, has been a great honour.
And with her busy schedule, she still finds the time to cherish those precious moments with her princess. "I often work on multiple projects simultaneously and my daughter enjoys a fun-filled, fearless mother who my friends would describe as a creative rebel," the multitasker remarks.
To those losing sight of hope due to keratoconus she says, "Wow, there are not many, if any, comforting words for someone losing their vision, especially those at an advanced stage. All I can say is, don't give up, with the hope that local medical community will sooner than later create a database of local sufferers and then establish a support group where we all can share our experiences and information on the most recent research developments. Perhaps the media could help with this, too, as I suspect there are quite a few persons who are wondering why their glasses seem useless."
Though Hitchins will eventually lose her sight, she not only beams with optimism, but views her medical discovery as an adventure of sorts, "My choices are either to walk past people I know and literally not recognise/see them or I will be staring everyone intimately in the face before determining if I know them and should say hi, or realise that they are strangers, at which point I would have been guilty staring rudely. Oh well, cheers to many more days of keratoconus laughable adventures."