A group of four CTCL patients gathered this winter for a face-to-face meeting. Over an informal lunch, attendees were able to share stories and meet others with CTCL. For some, it was the first time they had met anyone else with this disease. Kitty Farnham was one such person, saying:
Not until our face-to-face lunch had I ever met anyone else with CTCL. And, although each of us is experiencing the disease differently, I found it comforting to meet and talk to real people who, like me, are dealing with this challenge, this threat, and are also continuing to live ‘normal’ lives. We didn't meet as sick people; we met as people facing a common challenge, sharing information and experiences, and ready to be of help and support to each other.
All participants in the face-to-face meeting expressed interest in hearing personal experiences of others, including different stages, levels of treatment, and coping mechanisms. Janet Kowallek (who was six months pregnant at the time the photo was taken) said that, “this is a disease that is rare and only someone with personal experience can know how you feel.” Another attendee, Larry Miller, agreed with Kowallek’s sentiments, adding, “It felt good to meet someone who has the same cares, concerns and fears that I do.”
The woman who helped organize the event came away from the meeting feeling a little less alone. She said that, “it’s nice to see that people can still have a positive outlook.” After the experience, she has “gained a stronger network of people that [she] can talk to and ask questions. Having put a name with a face makes it that much better.”
San Francisco, CA
It was a small but mighty group in San Francisco. The war demonstrations made travel difficult in the downtown area, but Steve Griffith, David Elefant, Judith Shea and Judy Jones met with Steve Cooper and Frank Strobl of Therakos for lunch. The Therakos group shared information about the new clinical trials now available for using photophresis in early stage MF.
Judy Jones had met David Elefant at a face-to-face meeting in Los Angeles a few years ago, and they had a nice time catching up. This is one of the things Judy Jones enjoys about meeting others. Unfortunately, she was having such a good time that she forgot to take pictures!
If you would like to know how to arrange and publicize a face-to-face meeting, or to find one in your area, please visit us on the web at www.mffoundation.org, or contact the Mycosis Fungoides Foundation at 248-644-9014.