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Living with Klinefelter Syndrome: Part 6

Shortly after moving to Burlington, Massachusetts, I flew to Seattle, Washington, for my first national Klinefelter Syndrome conference. It was held at a hotel in Bellevue, Washington, over the course of a long weekend.  I met Melissa Aylstock, the founder and executive director of Klinefelter Syndrome & Associates (KS&A).  The first national organization was founded in 1989. I was timid and quiet as this was a new environment and situation. 

I sat in a room with 40 adult Klinefelter men, which was unbelievable!!  Sharing our lives and similarities was indeed the highlight of the conference for me.  Many of the men were diagnosed later in life as I was, and we shared many things and commonalities.  We talked about things we all felt defined us.  The discussions brought us closer and made it feel like a family gathering. I believe this is one reason I still regularly attend national conferences whenever they are held. Getting together annually and visiting together, and welcoming others is very important for all of us.  This is my second family, and social media has brought us closer together, but being in person and being together is different.

I sat in on a session for starting a support group while at my first conference.  This was very important as I needed to build up a new support network in the Boston area.  I still needed support, and this was an opportunity for me to find other men and families in New England to build a support network for them and myself.  It had only been six months since my diagnosis, and I still needed support. After the conference, I returned to my apartment and the Boston area with a mission and the tools to accomplish it. It was time to build a support group from scratch. Hoping the group will have a positive effect and evolve into a positive environment for those in need.

After returning and getting back to my new job, I started working toward the first group meeting.  It got planned for early November before the cold winter.  I found a facility and planned the meeting, and the national organization sent out a flyer advertising the meeting.  Having never planned or organized anything and never being a leader, I was a little nervous about taking on this new project.  

The first meeting was a packed house and more than I expected.  I prepared an opening presentation and tried to model this group similar to what I had seen at my first support group meeting. I was nervous and felt it inside. The presentation came across very well, and everyone in attendance was thrilled that there was now a support group to connect with others and to get information about this condition for themselves and their sons. I was nervous because I was still learning about the condition and myself, and guiding this group from a leadership perspective was a foreign concept.  Never having been much of a leader for the first 25 years of my life.  I would have just as quickly followed a friend off a cliff had he been willing to be my friend, so this was a new situation for me.

On the second Sunday of November 1996, I convened the first-ever Boston Area Klinefelter Syndrome Support Group meeting.  We had 50 people in attendance and grew out of the classroom space I had reserved for that first meeting.  The families and adult men who came together were grateful for the support network I developed in New England.  It was a group many of them had hoped for, for many years. At the end of the first meeting, those in attendance were already inquiring about a second meeting in the spring, if we could have a speaker, and if this could continue.

I was overwhelmed by the support and feedback and knew I had made the right decision to start this network.  Though I built it out of selfishness and still needed support, I realized that I provided a place for everyone to get that support, which was a great accomplishment.

By the second meeting in the Spring of 1997, we had outgrown the classrooms, moved to the auditorium, and had 90 people in attendance.  The support group had officially taken off.  In 2018, this group still existed, with other adults and parents handling the organization and planning, as I’ve been out of the Boston area since early 2000. I am happy to have started this support group network both for reasons of needing the support myself and seeing the genuine need for others.

Over the years I was directly running that group between 1996 and early 2000, we had very successful meetings.  In 1998, we started having two-day entire weekend mini-conferences. I got special hotel and meal rates at local hotels and restaurants to support the group meetings and offer places for out-of-town attendees to visit.  Even when I was out of the area for a year in 1997-1998, I could still organize and get up to the area to run the meetings.

At that time, I knew this group would continue and had enough stability to continue growing and stay on track. However, I am still surprised that 20+ years later, the group still has a regular following and regular attendees.  The group is still having twice-a-year meetings, and I am so proud that it has continued as it has always been needed.

I genuinely believe that I received the benefit of the support I needed for my recent diagnosis because of the way I saw others getting the help they needed. They supported me and my efforts and kept me moving forward.  This signified how fortunate I was to have the ability to plan, organize, and follow through with something that had so much potential and allowed me to lead and become a leader.

My life was now headed in a good direction.  I was no longer this quiet, shy, reserved person, and I became a leader almost overnight, and I was no longer just following others.  I was now living my life, learning about my condition, helping others, teaching others, giving presentations locally and nationally, and being asked to speak about my life and living with Klinefelter Syndrome.

After a year of working in Software Quality/Test Engineering, I was bitten by a big bug that told me I should pursue genetic counseling or counseling/social work as a career because I was working with and helping so many people with the condition that it was just a natural way of moving forward.  Diagnosis with this condition was like turning lemons into lemonade.  I had a path forward.  I knew I could move in this direction and change other people’s lives.

So, I left Boston, picked up, and moved back to Baltimore.  Found a software testing position in that area and registered and enrolled in classes for the Fall 1997 semester. I started in a Master’s program in Counseling Psychology at Towson University.  I was intent on slowly taking night classes in counseling while working towards my Master’s degree and working full-time.  I determined it was a great way to give back, help others, and make a difference.  I was relatively happy in software engineering. But knowing I had this gift in helping those with Klinefelter Syndrome to understand their lives, receive an early diagnosis, and succeed in life earlier than I ever could.

The first thing I noticed was it was much easier for me to concentrate and study, take notes, and take tests, and it became easier being on testosterone therapy.  It was easier as well since I had perfected my learning compensation strategies.  I completed three classes, one in the first and two in the second semesters, all while maintaining a 4.0 GPA and working full-time.  I enjoyed the classes but wasn’t sure I should go into this field. There was a better long-term solution working in software engineering.

I still maintained running and organizing the support group in the Boston area.  I still attended group meetings in Silver Spring, MD.  I began assisting other people in their regional areas to organize support groups for themselves and others in their locale and internationally.  I sometimes flew out to those meetings in Atlanta, Denver, and Seattle and drove to New York, Philadelphia, and other areas to attend and support the new groups being formed.  It was so important to bring people together at that time since the internet was still in its infancy.

At that time, I realized that Klinefelter Syndrome as a whole needed a toll-free support line where people could leave messages and get return calls to inquire about support, education, and advocacy needs.  I found and solely paid for the toll-free support line for more than ten years.  Though it did not ring directly to me or through a cell phone, I got notified via email when a message awaited me.

At the first support group in Aurora, Colorado, in the Spring of 1998, those in attendance challenged me to come up with a standard set of questions and answers that most people were looking for at that time.  Instead of doing that, I worked on a project with another XXY, and we created a video about the basics of living with Klinefelter Syndrome.  It was a stretch as we were formally dressed and read it almost like a script.  We didn’t memorize it or have a teleprompter for our usage, and the video was shot once, so we couldn’t modify and redo our efforts.  It was a one-shot deal, and though it wasn’t the best, it was undoubtedly the first and at least something to educate the public and provide information about the condition and answers to the most common questions.

At this time, I also developed and published my Klinefelter Syndrome Support, Education, and Information website.  I initially developed it through my internet service provider and then, in early 2000, purchased the domain name, where my website has been housed ever since.

At the time my website was published, there was only one other website that existed with Klinefelter Syndrome information, and that was the website of KS&A, now known as AXYS.

Continued in Part 7: Living with Klinefelter Syndrome

Back to Part 5

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