Kathleen Wilson

Country: USA
Age: 50
Occupation: Founding President, MSWorld, Inc
Type of MS: Relapsing remitting
Year of diagnosis: 1988

I was diagnosed with MS in 1988 after an overnight bi-lateral vision loss. I was thirty at the time, creating art, and felt a tremendous fear and panic at the thought of never being able to see again. It was a major life event because I had never been 'sick' before beyond the annual cold and flu season. Maybe, because of that, my inner voice and personal beliefs promised a full recovery.

It took a year but I did recover and went into remission until 1995. While in remission, I went back to living my life, travelling, creating art and frankly, within a year or so, I thought it would never happen again.

Then in 1995, while I was living in Athens, Greece, I had a life-altering flare-up of the disease. I was shocked and scared because this time it wasn't my vision but a gradual weakness and paralysis down my whole right side that emerged over a month. I kept hoping it would stop getting worse, but after many falls, and a slow progression of new symptoms, hope for a full recovery was not part of my thinking. I needed to get treatment and this time I knew it was MS, the very thing that I thought had gone away, never to return.

I flew home to the USA, where I experienced a deep feeling of isolation having left behind my life in Athens. Without my friends to share my challenges and answer questions about MS, I was at a loss. Even though I have a wonderful family and many friends, I knew that there must be others experiencing the same thing I was. I was unable to attend traditional support group meetings, so I purchased a computer, went online and began searching. I needed to connect with others facing this disease to end that horrible feeling of isolation, even though I was in the midst of a loving family and close friends.

In 1995, the internet was relatively new to the idea of online support groups. However, I did find a few, not for people with MS, but other conditions. I realised that the format was not only perfect for bringing people together but that it underpinned the importance of people with the same disease helping each other to face and understand it. I was feeling a bit better, having stopped the progression and I began to improve somewhat from the attack. Relapsing remitting MS is what the doctors called it, I just wanted to do everything I could to get better.

I quickly learned how to set up a chat room and in the summer of 1996, I started MSChat. This grew into MSWorld, an online community seeking to end the isolation that people feel when diagnosed with MS. During our very first real-time chat I knew that this was exactly what I needed, support and information from others going through the same thing. What a gift and today, in its 12th year, the membership has grown from a handful to more than 20,000 members worldwide, registering, on average, 40 new members a day.

I believe MSWorld’s success is due, in part, to my education and professional background but also because it fulfils a basic personal need to feel supported by others sharing the same fears and surrounded by the unknowns associated with MS. It is challenging, but made less frightening by talking to others about their successes, frustrations and coping skills. Even things as simple as "It's ok to fire your neurologist, find someone you like!" These are words of wisdom from others who have been down this path and it is now my turn to offer the same.

I have a Masters in Fine Art and have exhibited my work in Athens and throughout the USA. I also have a Masters in Mental Health Counselling. I have worked for the US National MS Society (NMSS) in Northern California as an Online Marketing Consultant; as the National Outreach Coordinator for The Hanford Health Information Network in Seattle and in advertising and marketing. I also enjoy writing and have authored chapters in a number of books reflecting on my life with MS.

The success of MSWorld is also down to the many people who, over the years, have faced life with MS and shared their experiences. On average at one time, thirty volunteers, each diagnosed with MS, moderate and help members find the support they are looking for at MSWorld. They share their time, stories and talents to help MSWorld extend its reach to those facing MS throughout the world. Together the volunteers have helped make a difference in the lives of hundreds of thousands of people coping with MS.

In 2001, MSWorld began an official collaboration with the NMSS. Six years later, MSWorld’s Vice-President, Dave Anderson, recognised MSWorld’s potential to work at an international level and began talks regarding collaboration with MSIF. This autumn, MSWorld will re-launch with a new logo and separate chat channels for MSWorld, the NMSS, and MSIF. Different language chat rooms will be offered to accommodate member needs throughout the world.

As MSWorld grows, it embraces new technologies and continues to deliver support and current information to its members. MS is a complex disease, made easier by talking with those who share the same challenges. I have discovered that as diverse as MS might appear to the outside world, it is a disease with a common language, known by those who live with it every day. With a virtual community, we are unbiased by physical limitations while gathering the insight from those who understand what it means to live with MS.

My motto is wellness is a state of mind. I believe that living well is a choice that we make every day and our personal happiness has everything to do with how we feel about ourselves and how we connect and share with others. Today, MS is very much a part of my day-to-day life, involving walkers, scooters, nutrition, what exercise I can do with a personal trainer and the hope that new treatments will come along that can make a big difference in my life. It is a daily, sometimes uncomfortable hope.

I meditate daily, accept what has happened and work to improve as much as I can. It is difficult, but I see no other option than to remain hopeful and enjoy all that I can. MSWorld helps me stay in touch with what's new, to help others and accept help while keeping very busy with a lifestyle that I enjoy. Yes, I have had to give up many activities but I do my best to stay focused on what is great in my life and try to make the most of every day.

Kathleen’s dedication to MSWorld, and the services it provides for people with MS, was recognised at the 2006 NMSS Annual Leadership Conference where she was awarded the National MS Achievement Award. In 2007, Kathleen was one of 12 nominees for MSIF’s James D. Wolfensohn Award for International Person with MS.