A rare disease can be isolating. It’s difficult to find others to talk to who truly understand the shock of diagnosis, the lack of awareness, the impact of symptoms, and the confusion over treatment.
Having a trustworthy group of individuals who can not only sympathize, but provide guidance, back up fears, answer questions, and validate experiences with a “I thought it was just me!” can make a world of difference. It offers those with rare diseases a sense of belonging and confidence. From the newly diagnosed to those who’ve experienced years managing the disease, it can lead to valuable insights or further questions to raise with medical professionals.
It’s with this sense of fostering community that the Acromegaly Ottawa Awareness and Support Network launched Acro-Connect. This series of guided discussions is becoming a lifeline for acromegaly patients not only in the Ottawa area but even further afield.
Held virtually for the time being to keep members safe from COVID, the sessions focus on a theme. A member of the Acromegaly Ottawa group or a professional related to the topic leads the group through a series of open questions, allowing everyone a chance to share their experiences and thoughts. It’s a warm, welcoming, and much needed way to feel understood and learn from others sharing the same journey.
The next session will be on mindfulness on September 1, 2020, at 7:30pm Eastern Time. Email firstname.lastname@example.org for details and a link to join the group.