World Rare Disease Day Patient Panel

In honor of Planet Uncommon Sickness Working day, the Individual Chief Network sat down with fellow unusual condition affected person leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to focus on the worth of resiliency, taking care of your have treatment, story sharing, and boosting awareness to help the rare disorder community.

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Important Takeaways

We experienced an incredible conversation with our 3 panelists speaking about the empowerment of sharing their activities dwelling with a scarce condition. They shared how they would like persons understood the psychological toll living with a wellness affliction has on on their own and their cherished kinds. As well as, how hurtful and dismissive the phrase, “well you really don’t appear sick” feels. And finally, they finished the panel by reminding us that sharing our story can make an immeasurable difference in the rare ailment community.

Meet up with the Panelists

Jenica Leah is an award-winning creator and blogger as nicely as a speaker residing with Sickle Cell Anemia. Because being identified with sickle cell at 6 months aged, Jenica has battled with the many issues that appear with the problem this kind of as stroke, acute chest syndrome, avascular necrosis in the two hips — the listing goes on. Jenica writes about the client expertise and what it is like to are living with sickle cell from a favourable viewpoint, sharing ideas and methods on managing the affliction that she has discovered in her 30+ several years living with sickle cell.Click on right here to discover more about Jenica.

Meridith O’Connor wears a lot of hats as a affected individual advocacy expert and performs with a range of stakeholders in the health care field. An avid author, Meridith is regarded the two nationally and internationally by numerous corporations committed to affected person empowerment, schooling, and assist. Her prepared function has been highlighted on quite a few digital platforms and used to instruct others about the continual health issues neighborhood and advocate for those in just. Meridith also often serves as an invited guest speaker for neighborhood and countrywide organizations collaborating with nonprofit companies, academic establishments, and health care associations to market recognition campaigns, advocacy attempts, and donor relations. Find out far more about Meridith’s advocacy here.

Jessica Hanson is a NYC-based mostly actor, singer, yoga instructor, fitness teacher, social media manager, blogger, autoimmune condition advocate, and cat lover. Jessica was identified with celiac ailment more than ten decades back after enduring unexplained symptoms for about six years. She’s been strictly gluten free at any time considering the fact that and operates the blog Delicious Meditation: Tales from a Gluten Absolutely free Kitchen (tastymeditation.com) together with the NYC Celiac Disease Meetup Group (meetup.com/celiac). She was later on identified with Graves’ Sickness and Thyroid Eye Disease and in just the past couple several years has gone through a overall thyroidectomy and orbital decompression surgeries. Continuing on her journey with TED, Jessica is hunting forward to her upcoming surgical procedure (a lid surgical treatment) in the new 12 months. She hopes that by sharing her story she can assistance other people experience less alone. Master extra right here Jessica’s effects in the autoimmune local community.