NKCF provides support and advice wherever you are
NKCF offers two online support groups that give those dealing with keratoconus (KC) a sense of community and the chance to interact with others worldwide who have the disease: KC-Link is an e-mail group, and KC Forum is a web-based bulletin board.
?A diagnosis of KC can leave people feeling isolated and alone,? says Catherine Warren, director of NKCF. ?Our online support groups provide a virtual community for those dealing with KC ? no matter where they are. They can learn from others who are dealing with or have already dealt with the same issues. They can get advice, share stories, learn about treatments and tips, and most of all, find out they are not at all alone.?
A paper in the December 2001 issue of Health Education Research reported numerous benefits associated with online support groups, including the following:
?With asynchronous communication, participants in online groups have access 24 hours a day, 7 days a week, at times most convenient to them. Asynchronicity allows individuals to carefully develop responses at their own speed. Geographic and transportation barriers are absent. People with mobility problems, speech and hearing difficulties or caregiving responsibilities can participate with ease. ? On the Internet, coverage spans the globe. This international scope permits group members to draw from a wide variety of perspectives, experiences, disabilities and points of view, while at the same time promoting a feeling of universality.?
Indeed, the worldwide reach of online support groups is inarguable: One would be hard-pressed to ?chat? with a doctor pioneering new techniques half way around the world, or ?meet? someone from a different state or country who experienced the exact same symptoms in a local face-to-face group. For those who are lucky enough to have local groups to attend, online groups are excellent supplements. For those who have no such face-to-face groups, they can be life-altering.
Ohioan Jeanette Hasseman has participated in KC-Link for several years. ?KC-Link has been a great blessing,? she says. ?I?ve downloaded information; I signed up for KC-Link and asked questions of Catherine [Warren] and the moderating doctors. I found great support for my own spirit, as well as information on the latest technologies.?
While the majority of participants in KC-Link are those who have keratoconus, quite a few healthcare providers also participate, including eye-care professionals, contact-lens fitters, optometrists and ophthalmologists. This is a key benefit noted by Carl Mankinen of Florida, who is a regular contributor to KC-Link: ?A lot of doctors who specialize in KC are routinely on the list providing information at no charge. You get good advice from doctors all over the world ? plus other people like yourself who may have information that is useful and can help you.?
One such doctor is William Trattler, MD, who specializes in refractive, corneal and cataract eye surgery at the Center for Excellence in Eye Care in Miami. He is also a parent of a child with KC: His 12-year-old daughter was diagnosed two years ago.
Trattler has been involved with KC-Link for three years and sees a ?huge advantage? in the online support group: ?KC-Link has a critical mass of people with keratoconus. Not only can patients get information and advice from people who have ?been there before,? but there are physicians ? ophthalmologists, optometrists, lens fitters ? who participate and answer questions. Different physicians have different experiences, especially relating to treatments and technologies, so when a KC patient posts a question, they can get a variety of information that may help them make decisions on their care.?
As the Health Education Research paper notes: ?For those with uncommon diseases, online groups may provide the only way to communicate with others who are dealing with similar problems.?
Keratoconus certainly falls in the category of ?uncommon diseases,? and KC-Link offers a lifeline to those who may feel ? or truly are ? isolated and alone. It?s a feeling Hasseman knows firsthand: ?It?s really hard to lose your vision. Even in your own heart, you can feel isolated. KC-Link gives you a body of other people who totally understand what you?re thinking, what you?re feeling, what frustrates you. There is so much advice you can get on KC-Link regarding contacts, how to keep eyes moist, how to handle low-light driving, what type of e-reader works best for people with keratoconus ? you cannot exhaust the information that is shared; you cannot exhaust the different emotions that are shared.?
Subscribers to KC-Link choose to receive individual e-mail messages throughout the day or a once-a-day digest format that includes all the day?s e-mails. Learn more about KC-Link.