Western Pennsylvania NMO Support Group Meeting recap, with guest blogger and support group leader Heather Sowalla.
I had the opportunity to host the first Western Pennsylvania NMO Support Group meeting. In total, three NMO patients and two family members came together on a beautiful Spring day at a small local restaurant called Eat-n-Park in Indiana, Pennsylvania.
Being a rare disease, many patients have never met anyone with NMO, let alone have had the chance to get together in person on a regular basis. While each patient in our small group had met an NMO patient before, the meeting was still bitter-sweet. No matter the circumstance, meeting another person with NMO is an amazing experience that few outsiders understand. Being a small part of a rare community give us a unique understanding of our disease. We all can relate to symptoms and processes we have all gone through to get properly diagnosed.
Family members at the meeting were able to talk to another in a way that was never before possible. While the NMO Patient Day conference in Los Angeles, CA, offers a great way to connect, the experience and information can be overwhelming. Many may be afraid to approach others, especially newly-diagnosed patients. Since a smaller support group is an intimate affair, it can be less stressful making connections.
The meeting location was chosen for its central location for attendees. We needed a location that everyone would be comfortable with, one that would offer some semblance of privacy. Overall group participation was fluid. We were able to talk about issues ranging from treatment with maintenance therapies to our thoughts and fears of having children with NMO. Topics were broad for this meeting. For the next meeting, members were asked to come prepared with topics they would like to discuss. Also, members brainstormed a future fundraising goal. Ideas included a walk with T-shirt sales, to an annual summer at the park event for NMO. The venue would be a central location. It would be handicap-accessible and allow an area for a picnic and games for children.
Making plans to meet every other moth, we ended the meeting with a saying that we all found appropriate for our journey with NMO: Never let a stumble in the road be the end of the journey.
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Heather Sowalla leader of the: