What I Experienced at an MPN Patient Meeting: 3 Stories
Author: Voices of MPN
Ever wonder if attending an MPN patient meeting in your area might be worthwhile? We asked three meeting attendees—two patients and one caregiver—to report back about their experiences at recent meetings they each attended. Here’s what they had to say:
Patient With Polycythemia Vera (PV)
David attended a local meeting in Charleston, South Carolina, with his wife. He noted that it was the first time he’d ever met someone else with PV.
"It’s nice to hear others’ experience of the symptoms they are feeling… I liked talking to them about that. It makes me feel better about it. Mostly because I am not alone, and there are other people feeling the same way I am."
Although David says he does a lot of research to educate himself about PV, he did learn new information at the patient meeting by having a chance to ask questions and hear others’ questions as well.
"I watch a lot of videos… (but) when I went to the meeting I learned some new things that I didn’t know before…It’s interesting. You might learn something that you could bring back to your own doctor or give them something to look into that might help you."
Overall, David said he’d recommend a patient meeting for anyone affected by an MPN.
"Caregivers can benefit from going. Any family member that wants to learn more about it. They have to understand what you are going through. There could be fatigue or other mood-altering symptoms. If they understand what it is you’re going through, they can accept it more and help you…I think it’s important to share your story with others as well as you gain something from hearing other people’s stories."
Patient With Essential Thrombocythemia (ET)
Kathy attended a patient event on her own in Greensboro, North Carolina, which she learned about from a Facebook friend. It was also the first time Kathy met someone else who has ET.
"When you have something that is so rare and unusual, it was great to meet people with the same thing. When you get people together who have a common bond, that’s always a good thing."
Kathy said the interaction with people who have "been there" makes patient meetings unlike any other resource for learning about your condition.
"You can do all the research in the world and read everything you can, but when you’re in a room with people who have the same thing going on, it’s a big difference. There is a lot in terms of personal experience that you don’t get when you’re just doing research…Your doctor knows the disease, but they haven’t experienced it."
Connecting with others living with MPNs was eye-opening for Kathy, she said, in terms of what others’ experience compared with her.
"It’s not a one-size-fits-all disease. You can have two patients with ET and their experiences, symptoms, and response to medication can be totally different. I’m mostly asymptomatic. There were a lot of people there who had debilitating fatigue. I think that probably was one of my biggest take-aways from the meeting is that everyone is different."
Shauna and her husband attended a patient meeting in Kansas City, Missouri with their 11-year-old daughter who has ET. She says the patient meeting made them feel like they had a real community to lean on for insights.
"We’ve stayed in touch with two people we met there. I go to them a lot with questions because they are both women and they’ve both had ET for a while. I can ask if they’ve experienced any of the problems or symptoms my daughters has, and it helps me understand…When I talk to them, I feel more armed when I talk to my doctor."
Shauna said interacting with patients and other caregivers offers real-life insights that doctors don’t always have.
"With these groups, you hear about what it is actually like to live with the disease, what it feels like, what the symptoms are…When people experience these things, they can tell you what it’s actually like. When you hear it from a doctor, they explain it differently."
For Shauna’s young daughter, she said, the patient meeting offered her the first opportunity to recognize there are others like her.
"She realized she wasn’t alone," Shauna said.
"I would absolutely recommend others go to patient meetings," she added. "They are not alone in this, and you will make friends for life that know what you or a loved one is going through."
Looking For An MPN Patient Meeting In Your Area?
Incyte Corporation sponsors live patient meetings and other events throughout the United States. Click here to learn more and to find one in your area.