Finding Community in the LFS Community

There have been 2 conferences in the past 5 years that included people living with LFS. As inspiring as it was to learn more about the syndrome, for many the most impact was felt in the opportunity to meet and talk with others who know what it is like to live with a hereditary cancer syndrome.

The rare nature of Li-Fraumeni Syndrome makes it difficult to find others with this syndrome but also to meet up with them. Traditional support groups are impractical as members seem to be dispersed all over the world. Yet through Social media, the internet and open lines of communication with clinical centers, more and more mutants are getting the opportunity to meet up. These opportunities are as priceless as they are rare.

Recently, a few ladies with Li-Fraumeni Syndrome got to meet at the University of California San Francisco Medical Center. I caught up with Catherine, one of the attendees who was gracious enough to share some information about the event. It is inspiring to see how this sense of community is so inspiring for the individuals who get to be a part of it.  I hope other patients and clinical centers see how important this is and take initiative to help each other though personal support. It makes such a huge difference when Living with LFS.

How did you hear about the meeting at UCSF?

I learned about this meeting through a posting on the the LFS group page on Facebook.  Linda Zercoe sent out a general inquiry about people in the area and if they would be interested in meeting at a luncheon at UCSF. I immediately responded as I am anxious to get as involved as I can in networking with individuals and professionals who have an interest in LFS.

Where was the meeting at?

The meeting was held on a rare hot day in San Francisco at UCSF Medical Center at Mount Zion . It was on the fourth floor in a building that was established in 1887. There was a spread of cold salads and croissants to munch on as we all spoke about our LFS experiences: Those with LFS spoke about living with the mutation, and the professionals discussed what led to their interest in researching it.

Who hosted the meeting?

The meeting was hosted by Beth Crawford and Julie Mak, both genetic counselors at the cancer risk program at UCSF.  Beth and Linda go way back and know each other very well. 

In attendance were two genetic counseling interns, as well as a third genetic counselor.

Did you get to meet other mutants?

It was a treat meeting other fellow mutants at the luncheon. While living with LFS and the specter of future cancers is certainly not fun, there is an instant sense of camaraderie when you are in the presence of other mutants.  I met Linda Z. and Elim, two incredibly strong and insightful women who also have LFS.  We shared our individual stories about living with the mutation, when we were told that we indeed had the mutation, and about our own cancer histories.  While the luncheon was due to end at about 1:00 PM (beginning at 11:30) they graciously allowed the three of us mutants (and my husband, Matt) to use the room as long as we desired, which ended up being close to 4 PM. 

We shared ideas, stories, family reactions, names of doctors and so much more. The genetic counselors wanted to know what more they could do for us, and if we wanted to make
this a regular event. They wanted to know what would help us as a community in regards to newsletters, message boards, information resources, and further meetings. 

What was the most interesting thing you learned at the meeting? 

The stories of the other two women and their own personal journies were fascinating!  We have all had such a different experience with LFS, and it was great to hear about how LFS fits into each of our lives. It was also very interesting how eager other families living with LFS are to connect and learn from one another. While our personal journeys vary wildly, I believe that solace is found in knowing that you are not alone in this crazy ride that the p53 mutation puts us on.

Do you think other institutions should have similar meetings?

Absolutely!  I thought that it was so refreshing knowing that these medical professionals who have no affiliation with my own doctors were there and eager to reach out and help.  While attending the LFS conference in Boston was interesting, I felt as if I got much more out of this intimate meeting with only patients and genetic counselors.  It was also helpful hearing names of local doctors who are interested in LFS.  We will be meeting again soon,  and I can't wait to learn more about my fellow mutants - and about other research being conducted with the p53 mutation.

Any other thoughts or ideas?

The informal nature of the meeting really allowed us as patients to lead the discussion, it was all about us and how we can be helped. It felt good to know that these people cared not just about my mutation, but how they could use that knowledge to help mitigate future cancer risk for me, personally.

Many Thanks to Catherine for taking the time to let us live vicariously through her experience.  I also want to applaud author Linda Zercoe and all those who played an instrumental role in organizing this event at UCSF. It really makes a difference for the LFS Community.


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