World Rare Disease Day Patient Panel

In honor of Entire world Rare Illness Working day, the Affected person Chief Network sat down with fellow exceptional illness affected individual leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to discuss the great importance of resiliency, taking care of your individual care, story sharing, and elevating consciousness to guidance the exceptional disorder group.

Crucial Takeaways

We experienced an amazing discussion with our three panelists speaking about the empowerment of sharing their experiences dwelling with a uncommon issue. They shared how they desire people understood the emotional toll dwelling with a health and fitness ailment has on on their own and their cherished kinds. As nicely as, how hurtful and dismissive the phrase, “well you really don’t look sick” feels. And finally, they finished the panel by reminding us that sharing our tale can make an immeasurable distinction in the scarce illness group.

Satisfy the Panelists

Jenica Leah is an award-profitable writer and blogger as very well as a speaker residing with Sickle Mobile Anemia. Considering the fact that staying identified with sickle cell at 6 weeks aged, Jenica has battled with the a lot of troubles that arrive with the problem these types of as stroke, acute upper body syndrome, avascular necrosis in each hips — the record goes on. Jenica writes about the individual practical experience and what it is like to dwell with sickle mobile from a favourable viewpoint, sharing guidelines and tricks on controlling the condition that she has realized in her 30+ yrs living with sickle mobile.Click on in this article to master much more about Jenica.

Meridith O’Connor wears lots of hats as a individual advocacy specialist and performs with a selection of stakeholders in the healthcare field. An avid writer, Meridith is acknowledged both of those nationally and internationally by various businesses devoted to affected individual empowerment, training, and help. Her created operate has been featured on many digital platforms and used to instruct some others about the continual health issues local community and advocate for individuals inside. Meridith also usually serves as an invited guest speaker for local and nationwide corporations collaborating with nonprofit organizations, tutorial establishments, and health care associations to market consciousness campaigns, advocacy initiatives, and donor relations. Master extra about Meridith’s advocacy below.

Jessica Hanson is a NYC-based actor, singer, yoga teacher, health and fitness teacher, social media manager, blogger, autoimmune illness advocate, and cat lover. Jessica was diagnosed with celiac disease above ten many years back just after going through unexplained indications for about 6 yrs. She’s been strictly gluten free of charge at any time considering that and runs the website Tasty Meditation: Tales from a Gluten Cost-free Kitchen area (tastymeditation.com) alongside with the NYC Celiac Ailment Meetup Group (meetup.com/celiac). She was later diagnosed with Graves’ Ailment and Thyroid Eye Disorder and within the past few many years has undergone a overall thyroidectomy and orbital decompression surgical procedures. Continuing on her journey with TED, Jessica is searching forward to her next surgical procedures (a lid surgical procedures) in the new yr. She hopes that by sharing her tale she can help other individuals feel considerably less by itself. Understand much more listed here Jessica’s influence in the autoimmune neighborhood.