World Rare Disease Day Patient Panel

In honor of Planet Exceptional Condition Day, the Individual Leader Network sat down with fellow unusual disorder affected person leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to discuss the importance of resiliency, handling your very own care, tale sharing, and elevating consciousness to help the scarce illness community.

Vital Takeaways

We had an remarkable conversation with our three panelists talking about the empowerment of sharing their encounters dwelling with a exceptional issue. They shared how they desire persons comprehended the emotional toll dwelling with a wellness ailment has on by themselves and their cherished ones. As well as, how hurtful and dismissive the phrase, “well you don’t appear sick” feels. Lastly, they finished the panel by reminding us that sharing our tale can make an immeasurable variation in the exceptional disease group.

Meet the Panelists

Jenica Leah is an award-winning writer and blogger as nicely as a speaker dwelling with Sickle Mobile Anemia. Considering that currently being diagnosed with sickle cell at 6 months aged, Jenica has battled with the lots of difficulties that arrive with the ailment these as stroke, acute chest syndrome, avascular necrosis in equally hips — the listing goes on. Jenica writes about the client practical experience and what it is like to dwell with sickle cell from a beneficial viewpoint, sharing recommendations and tips on handling the condition that she has acquired in her 30+ years dwelling with sickle mobile.Click right here to learn additional about Jenica.

Meridith O’Connor wears lots of hats as a client advocacy specialist and will work with a selection of stakeholders in the healthcare field. An avid author, Meridith is acknowledged both of those nationally and internationally by a number of companies dedicated to patient empowerment, training, and aid. Her composed work has been featured on a lot of electronic platforms and used to train some others about the continual health issues community and advocate for people inside. Meridith also usually serves as an invited guest speaker for area and countrywide corporations collaborating with nonprofit businesses, academic institutions, and health care associations to market awareness strategies, advocacy endeavours, and donor relations. Discover extra about Meridith’s advocacy listed here.

Jessica Hanson is a NYC-based mostly actor, singer, yoga trainer, exercise instructor, social media supervisor, blogger, autoimmune disease advocate, and cat lover. Jessica was identified with celiac disorder more than ten years ago right after enduring unexplained signs or symptoms for about 6 a long time. She’s been strictly gluten no cost ever since and runs the website Tasty Meditation: Tales from a Gluten No cost Kitchen area (tastymeditation.com) alongside with the NYC Celiac Disease Meetup Team (meetup.com/celiac). She was afterwards identified with Graves’ Illness and Thyroid Eye Illness and within just the earlier few a long time has gone through a full thyroidectomy and orbital decompression surgeries. Continuing on her journey with TED, Jessica is searching forward to her up coming operation (a lid surgical procedure) in the new calendar year. She hopes that by sharing her tale she can help other people really feel much less by itself. Study additional listed here Jessica’s effect in the autoimmune group.