Dysautonomia International is putting the volunteer spotlight on Jackie Cinnamon this month. Jackie has been volunteering for Dysautonomia International for the last five years. “I wanted to start volunteering for Dysautonomia International because I thought if I could help even one person avoid going through what I went through, then it would be time well spent.” Despite being seen by a variety of specialists at well respected medical institutions, Jackie experienced a diagnostic delay of four years for dysautonomia, and six and a half years for a systemic autoimmune disease underlying her case of dysautonomia. Earlier identification and intervention could have made a big difference.
Jackie volunteers as a member of Dysautonomia International’s Patient Advisory Board. She recently spoke at Dysautonomia International’s 7th Annual Conference about being a parent and having POTS. When asking Jackie if she had a special moment while volunteering she says, “[c]onnecting with patients and their family members, or advocating on their behalf, never stops being special. It is an honor to be trusted with someone’s story and have the opportunity to connect them with information and resources that will help make them more effective self-advocates.” Jackie also helps moderate her Dysautonomia International state support group and is always so helpful and kind to others in the community.
“Don’t give up! When one approach fails, move on to the next one. When one doctor is out of ideas, consider consulting with another. Take mental health breaks as needed, then get back at it. My own experience over the past 12 years has been that information is power when it comes to living with poorly understood, under-recognized, health conditions. Learn how to identify reputable resources, then do everything you can to educate yourself and become a well-informed self-advocate. My favorite resources are PubMed, journal articles available through Dysautonomia International’s website, and Dysautonomia International’s Autonomic Disorders Video Library and YouTube where you can watch webinars and presentations from conferences.”
Thank you Jackie for everything you do!
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