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Keratoconus - A Keratoconus Parents Guide For Families

 

A Keratoconus Parents Guide For Families

Written for KC Global Exclusively
 

We all love our children for the exceptional persons they are. But some of us live out that love in a very challenging framework. Our children have seemingly rare diseases, diseases that are so uncommon that it's difficult to find treatment options for them.

About a year ago, my son was diagnosed with keratoconus. He was 22 at the time, and already struggling to turn his life around because of some other significant challenges. We had noticed him squinting for a number of months, but he insisted he didn't need an eye exam. Finally, he asked me to make him an appointment.

It hardly seems fair that this disease most often strikes in adolescence or young adulthood, that bittersweet time when the task of finding one's way in life seems to be enough of a challenge. Imagine the extra challenge that limited vision imposes on someone struggling to gain entrance to college, obtain a driver's license, or enter the workforce.

I began to be concerned when the optician called me in and asked me if anyone in the family had keratoconus. I couldn't even understand what she was saying, and asked her to spell the disorder for me. Not yet understanding what we were up against, I had the prescription filled for a pair of glasses for him.

That night I hit the Internet hard, and began months of relentless reading about this disorder. I was hopeful that his case was mild, and that glasses would do the trick for a while. They didn't help at all, and that's when I began to feel shaky.

On the Internet, I tapped into the KC Global Community, which pointed the way to promising research and names of doctors who were offering advanced treatment. It is in a spirit of thanksgiving for all those patients and parents and their freely shared advice and knowledge that I write this article, which is going to concentrate on the emotional impact and share some lessons I learned along the way about how to cope. I have to be honest and say that some of them are lessons I learned from my own failures.

Our next stop was a local cornea specialist. I can tell you how I felt that day. When the doctor glibly said, "Oh yes, he definitely has it, but don't worry, I can do transplants, I do them all the time." I felt as if he had taken a baseball bat to my knees, because I nearly crumpled to the floor.

(1) Understand that in some places, market forces drive medical treatment. Here where I live, corneal surgeons are not necessarily going to aggressively push procedures that will undercut their highest price service, the cornea transplant. Understand also there are local constraints and a lack of treatment options availability. Most doctors will explain the treatments that they are trained to performed, but some may not volunteer information about emerging treatments because they prefer the prudent course of waiting, or is late in knowing about them, or is not backed with the finance or training needed by their own employers for a wider adoption of new procedures.

There is further difficulty with widespread availability of new procedures because of the investment involved in procuring new equipment for better, earlier, more careful diagnostic testing, and more individualized personalized treatment and care. Also the need to train staff in these new diagnostics skills and procedures are typically under funded. All of this underscores the need for patients to seek second (and perhaps even third) opinions and become fully informed about treatment benefits and risks. You must do your own research and fully vet out the risks and benefits of treatments that are not widely available to you locally. It’s always the case of doing your own research on any treatment option, be it corrective lenses, crosslinking, or corrective surgery, as it’s your eyes after all and each persons individual requirements are different.

The doctor's responses to my questions about emerging treatments (at the time) like collagen crosslinking and intacs was dismissive and contrary to published peer reviewed research results. My son did not remain a patient of his for long. Another doctor (after my son was treated) seemed incredulous that I dared to question the first corneal specialist we saw.

At this point in our story, I think it's time to talk about how to cope with the impact of the diagnosis. My point of view is that of a parent of a young adult who did not have to include me in his treatment decisions, so I became a conduit of information to my son, hoping that he would find hope, and ultimately choose to try one of the emerging treatments. It was important to me to take action, to feel less helpless and hopeless. I spent three or more hours every night reading every link down to the tenth or twelfth search return page on Google. I read everything from blogs to online medical journals. I spent so much time at my desk after my normal 12-hour day job that I eventually developed some health problems because of the lack of physical activity. I don't regret the time I spent during this phase, because it was clear to me that my son's vision was growing worse as time went on.

(2) Don't fixate on the negative. As I read the personal accounts of KC patients and their stories, I became very anxious and fearful that this condition would limit my son's ability to live a full and independent life. I read about the long recovery period for transplants, I read about graft rejection, I read about months of painful trials of contact lenses, I read about hydrops, and corneal opaqueness and scarring. I read about people who had to plan their day around the two hours that they could wear their lenses comfortably, because they were without functional sight for the rest of the day. I became terrified that my son would not find his way to an independent adult life.

Clearly, I needed to re-read the success stories of people who have had their sight restored by any of the many means available.

(3) Realize that your emotional state will proceed through stages. At one point I broke down. I raged and grieved and spent long nights crying alone by my computer. I shook a fist at heaven and wanted to know WHY my son had been chosen for this particular cross to bear in life. I knew that if someone could have transplanted my own eyes into my boy, I would have gone sightless the rest of my days to give him a chance at normal vision. I flashed back to the moment of his birth, how he was born with his big beautiful blue eyes wide open and taking the world in. And every time I saw him contort his face, squinting in an effort to make out the TV screen or a menu in a dimly lit restaurant, it cut my heart open anew.

There is, of course, no answer to that big WHY. The anger and sorrow were both part of a grieving process. We grieve the loss of a healthy perfect child in a similar way to the way we mourn the death of any loved one. We must do what it takes to move past it, and embrace the fact that KC has become a part of our lives. The most important advice I can give to parents who are in this stage is: (4) do your grieving and doubting in private. Don't let your child see how shaken you are. Imagine that their emotional state must be a hundred times shakier than your own. Find a good friend, go out for coffee and have a good cry out of the house where your child can't see you. In front of your child, you must be a beacon of hope while empathizing with the difficult emotions that your child must be experiencing.

(5) Encourage your child to talk about it, but respect their need not to talk about it. Don't hover, and keep your worries to yourself. Most young people want, more than anything to just be normal. Reminding your child every day that their eyes are a problem is not going to help them. They are aware of it every waking hour, you are not telling them anything new.

Once you've gotten a grip on your own emotions, go a step further and (6) offer every piece of positive news as a reason for hope. I fed my son the information on C3R and Intacs, and told him we would spare no expense to try any treatment that looked like it offered the hope of avoiding transplants.

(7) Support and praise sound decision-making. Your keratoconus child probably feels that so much is beyond his or her control. Having an active role in treatment decisions, even if they are not yet fully adults, can help boost their self-esteem. I was at a difficult point, because I thought that C3R and Intacs together were the best option, but my son wanted to proceed along a path of least invasive to more invasive treatment options. Because he is an adult, my role was to explore and inform and ultimately to support his choice financially and emotionally. I was delighted when he later decided to go for both treatments at the same time, simply to minimize the need to travel again for two treatments.

(8) Stretch your comfort zone when making decisions. Don't over constrain the process. Remember that the best treatment options might not be offered locally, and if you are in the US, there are some very promising treatments that are not yet approved here by the FDA. You may need to travel for treatment, and might be surprised to find that the lowest cost route to some newer treatments will take you beyond your national borders. Perhaps it's best to look at it this way: KC (while not so rare as many a rare disease) is such an uncommon condition that it really forces you into a global community. You're just not going to find that many people in your hometown who have it. Don't make your decision based on insurance coverage either. You may be able to find payment plans or financing from extended family members, that will help you avail yourself of options that are not covered yet by insurance.

(9) Model good patient behavior. I probably overstepped my boundaries, and became the lead questioner during many doctor's visits, but I hoped I was a good role model for my son, about being an assertive, informed and polite interviewer when we talked with doctors. I always tried to lead my son into the conversation, because he was not likely to make the first move. Remember that your KC child is going to be dealing with eye specialists for a long time, and that they will grow up and handle these visits without you at some point. You can be an important conduit for information in both directions.

A visit to see the Doctor often centers on objective measurements like reading an eye chart, observing with a slit lamp or mapping the cornea's surface. I have found that good doctors also (10) listen to the patient's subjective assessment of their current vision. For example asking such questions as, "Is the ghosting worse?" or "Is your vision worse at night?" or "Do you have more trouble when there is low contrast?" Objective measurements may show improvement while a patient is still experiencing some significant vision challenges in everyday life.

(11) Knowledge brings understanding. When doctors can't correct KC vision with the standard set of cylinder, axis and sphere correcting lenses, it's easy for a young patient to feel freakish and hopeless. We are only just beginning to understand how KC produces optical aberrations that can be addressed by wavefront technologies. I feel good doctors will help ease the patient's fears by explaining more about subjects like this.

From our experience the best doctors, respect and treat the whole person, and not just the corneas. They have compassion for the impact that the disease has on the quality of the patient's life. They offer hope, and a willingness to refer patients to other doctors who are trying new procedures.

I don't want to give advice on what treatment might be best, as each patient must do his or her own research and make an individual decision. We had to travel far for my son's treatment, but he is pleased with the results so far. We are both moving into what I hope is a post-KC period in our lives. It is no longer something I worry over every waking minute, and my son is back to life as usual, cutting a dashing figure in his UV-blocking dark glasses when he's out in the daylight.

(12) Move beyond KC. For many very intense months, my son's KC was my primary concern. My quest for information cut me off from a social life for a long time. KC will always affect our family. It impacts my retirement planning, because I would like to put a little more money by for my son, and in case my other son develops it. I worry that they might be unable to work if their vision gets very bad at some point in the future. I worry that treatments will have to be redone or revised, and I worry that they may some day have children with KC. I'll have to let go of all this worry, and take hope from the success we've had so far, and believe that we will meet any new challenges that the disease throws our way.

I stay intermittently tapped in to the global KC community, and try to offer support where I can. There is much exciting news reported month by month, as the new treatments mature, and it is truly inspiring to witness the warm concern with which patients and parents share their information and support.

I hope that your own story turns out as well, and that you too will pass on the kindness you've received from others. I know that my son's disease may actually progress again at some point, and this does not frighten me. The science of treating KC continues to advance, and I know that the KC community will be there for us if we need them again.

4/6/2015 update:  I am happy to report that there has been no progression of symptoms since my son's treatment in 2007, and the vision he regained after crosslinking and intacs has held steady.

 

Written by KC Mom, Elizabeth DeFortes, for KC Global exclusively on the 14th of November 2007 and updated on the 4th of June 2015.
 
 

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