In honor of Entire world Rare Disorder Working day, the Patient Chief Community sat down with fellow scarce disorder client leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to explore the relevance of resiliency, handling your possess treatment, story sharing, and increasing awareness to assist the rare ailment community.
We experienced an extraordinary conversation with our a few panelists talking about the empowerment of sharing their activities living with a rare ailment. They shared how they wish people recognized the emotional toll residing with a health affliction has on on their own and their liked types. As nicely as, how hurtful and dismissive the phrase, “well you really don’t look sick” feels. And finally, they ended the panel by reminding us that sharing our tale can make an immeasurable big difference in the unusual sickness local community.
Meet up with the Panelists
Jenica Leah is an award-successful writer and blogger as nicely as a speaker residing with Sickle Mobile Anemia. Given that being diagnosed with sickle mobile at 6 months previous, Jenica has battled with the numerous difficulties that appear with the dysfunction this sort of as stroke, acute chest syndrome, avascular necrosis in each hips — the listing goes on. Jenica writes about the client working experience and what it is like to live with sickle mobile from a positive point of view, sharing recommendations and tricks on controlling the ailment that she has discovered in her 30+ many years living with sickle mobile.Click here to find out far more about Jenica.
Meridith O’Connor wears lots of hats as a affected individual advocacy professional and is effective with a variety of stakeholders in the healthcare field. An avid author, Meridith is regarded the two nationally and internationally by numerous businesses dedicated to individual empowerment, education, and help. Her published work has been showcased on various digital platforms and used to train other folks about the chronic ailment neighborhood and advocate for these within just. Meridith also regularly serves as an invited visitor speaker for regional and countrywide businesses collaborating with nonprofit companies, academic establishments, and health care associations to advertise recognition campaigns, advocacy attempts, and donor relations. Understand far more about Meridith’s advocacy in this article.
Jessica Hanson is a NYC-based actor, singer, yoga trainer, health instructor, social media manager, blogger, autoimmune sickness advocate, and cat lover. Jessica was diagnosed with celiac illness more than ten decades in the past after suffering from unexplained symptoms for about 6 a long time. She’s been strictly gluten absolutely free ever since and runs the blog Delicious Meditation: Tales from a Gluten No cost Kitchen area (tastymeditation.com) alongside with the NYC Celiac Condition Meetup Team (meetup.com/celiac). She was afterwards diagnosed with Graves’ Sickness and Thyroid Eye Illness and within the earlier couple of yrs has gone through a overall thyroidectomy and orbital decompression surgeries. Continuing on her journey with TED, Jessica is searching forward to her subsequent medical procedures (a lid surgery) in the new year. She hopes that by sharing her tale she can aid some others experience considerably less by itself. Learn additional listed here Jessica’s effect in the autoimmune group.