Meet Ken Euteneier, Founder of FibroHugs

When I announced I would be doing a series of articles on “People Who Are Making a Difference,” I was inundated with e-mails from people telling me how the FibroHugs website and its founder, Ken Euteneier, had changed their lives. As I read the stories, it became obvious that this gentleman has indeed made a significant difference in the lives of thousands of people.

Ken was diagnosed with fibromyalgia in 1996, following 12 years of searching for answers to why he had periods of numbness in his extremities and always seemed to have the “flu.” Even after he was diagnosed, his doctors had little to offer him. In fact, one specialist’s advice on how to cope with FM was to pretend he wasn’t sick.

How FibroHugs Began

Not receiving much help from his doctors, Ken and his wife, Donna, began searching the internet for information from their home in Regina, Saskatchewan, Canada. Of course, in 1996 there was precious little available about FM. They found scattered bits and pieces but nothing comprehensive.

The couple decided that the first thing they needed to do was to gather all the bits and pieces of information and group it together on one website. When they began to get e-mails thanking them for their efforts, Ken and Donna thought it would be nice to get these people together on a website that would enable them to talk to one another, so they set up message-board forums and later added a live chatroom.

The 20 to 25 people who were gathering to chat on a regular basis began to feel like a little family. Ken knew there were a lot more people who needed the kind of personal support he and his little family had found, so he started searching for other small FM sites, e-mailed them and invited them to visit FibroHugs. Soon doctors were recommending the site to their patients.

Today there are 18,000 registered members and many more visitors with five to 10 new people joining every day. Ken is both pleased and saddened by the statistics –– pleased that so many people are finding the support they need, but saddened at the number of people that are suffering from this illness.

What Makes FibroHugs so Special?

FibroHugs seems to be the embodiment of the three Cs: Caring, Concern and Compassion. Letter after letter spoke of how understanding the people on FibroHugs are and how no one judges you. It was referred to as a “lifeline to sanity.” Some shared very personal stories of being on the verge of ending their lives until the FibroHugs community reached out to them and gave them the encouragement and support they needed to go on. Many shared how this site has helped them turn their lives around.

Another common theme that ran through many of the e-mails I received was how safe and secure people feel using the FIbroHugs site. Ken works hard to maintain that safe environment. Chatrooms are monitored 24 hours a day, enforcing a very strict policy of no swearing, racism, religious talk, or politics. New members are given guidelines advising them not to give out their phone numbers or other personal information. Special “spiders” are set up that routinely go through the site, sending an alert when advertisers try to post links to their sites. Such postings are quickly deleted.

CancerHugs

About three years ago, when some family members developed cancer, Ken and Donna discovered there was a serious lack of one-on-one personal support available for cancer patients –– so they began a sister site to FibroHugs called CancerHugs. Ironically, four months into building the site Donna was diagnosed with cancer. The FibroHugs family suffered with them, encouraged them and then mourned with Ken when, sadly, Donna passed away two years ago. Needless to say, Ken was devastated, but through it all, he has maintained his commitment to his FibroHugs family.

Keeping FibroHugs Alive

Ken is adamant that FibroHugs is not about making money –– in fact, it has cost him quite a lot over the years. He has his own sign and etching business, which is how he originally began funding the site. When it became too expensive to maintain solely through his business, he began to take a few ads, however, Ken puts potential advertisers through a rigorous inspection before accepting them. In addition to the small handful of ads on the site, FibroHugs sells FM Awareness items, has an eBay store and accepts donations.

Ken has an intense loyalty to the people on his site. He has made a commitment that FibroHugs will always be there for them. So serious is he about keeping this promise that he has made arrangements in his will for his children to continue the mission of FibroHugs.

Ken’s Advice:

When asked what was the best advice he could give to someone with fibromyalgia, Ken replied, “Understand that this illness hasn’t ruined or taken away your life. It’s just getting you to make adjustments so you can live just as well in a different way.”