Ireland Reveals Its Patient Stories
Story #1 – Dropping into the Whiskey Fair in Dun Laoghaire just outside Dublin—I was on a day-long tour with my Irish friend Michael Rynne, the husband of a CLL patient (more about that below), and it was lunchtime. The construction workers at the ATM machine on the main street told us the best place to go was the Whiskey Bar, so that was our next stop. We were early, so there was time to strike up a conversation with the co-owner, Sabrina Mooney, 35, an attractive and friendly woman. Given my non-Irish accent, she asked where I was from. I explained I was an American who has been living in Barcelona. She then asked, “Are you retired?” I told her no, that I worked on the Internet. My friend Michael rushed to add that I didn’t do something sleazy like online pornography, but quite the contrary, tried to do good with videos for cancer patients. Boom! Sabrina immediately shared that her son, Jamie, is in the throes of treatment for Hodgkin lymphoma, a condition we cover on Patient Power. I told her I had interviewed numerous young people with the condition, and most are cured or doing very well, and that a new medicine, brentuximab vedotin (Adcetris), has been helping people who didn’t beat the cancer with initial therapy. Sabrina, took heart from that. But then she went on, “Jamie has been a caregiver for ME. Now I am HIS caregiver.” Why? Because Sabrina has epilepsy and lately has been having a few seizures a month. She developed it after meningitis as a youth. And while a strong medicine, gabapentin (Neurontin), has worked well for the past few years, the seizures have been getting worse. That sparked my discussion of seeking out clinical trials, in Ireland or the UK.
Clearly, Sabrina was yet another example of someone affected by a serious condition (in her family case, two) and where she was actively looking for better care for herself and her son—the best doctors, the best medicines and access to both. Today patients around the world have a sense there may be better answers, but it takes them being proactive to uncover them. Sabrina and Jamie even went on Irish television to tell their stories, and my friend Michael had seen them and was touched then by what they said and, during lunch, touched even more in person.
Story #3 – Dinner with Jan Rynne and Josephine Brady and their husbands. As our full day in Dublin was ending, Michael arranged a dinner for Esther and me with Jan, who we had met before at a CLL event last year in Cambridge, and another couple where the wife was newly diagnosed. People meet in strange ways. Michael has a furniture manufacturing business and provides counters and tables to libraries around Ireland. Josephine is a librarian. In conversation at the library, Michael learned Josephine, with swollen lymph nodes and fatigue, had been diagnosed with CLL/SLL. He shared Jan’s story, and the women made a quick connection. At dinner, I was delighted to learn that both rely on Patient Power, our friend Dr. Brian Koffman and his CLL Society, and partners at CLL Forum and HealthUnlocked’s CLL community for almost daily information updates, guidance and support. In speaking with Josephine, I was bowled over by how much she knows. And it seems she has a crush on Dr. Jeff Sharman and is ever grateful for his blog. Josephine is quickly catching up with Jan, understanding the importance of being proactive, seeking second and even third opinions, and being open to participating in a clinical trial.