World Rare Disease Day Patient Panel

World Rare Disease Day Patient Panel

In honor of Entire world Rare Disease Day, the Affected individual Chief Network sat down with fellow exceptional ailment client leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to discuss the great importance of resiliency, running your have treatment, tale sharing, and boosting awareness to aid the rare illness local community.

Crucial Takeaways

We experienced an outstanding discussion with our a few panelists discussing the empowerment of sharing their encounters living with a uncommon situation. They shared how they would like people today comprehended the emotional toll living with a overall health issue has on themselves and their loved ones. As effectively as, how hurtful and dismissive the phrase, “well you really do not glance sick” feels. Lastly, they finished the panel by reminding us that sharing our tale can make an immeasurable distinction in the exceptional disease community.

Satisfy the Panelists

Jenica Leah is an award-profitable author and blogger as nicely as a speaker living with Sickle Mobile Anemia. Considering the fact that remaining diagnosed with sickle cell at 6 months previous, Jenica has battled with the many problems that occur with the disorder these as stroke, acute upper body syndrome, avascular necrosis in both equally hips — the list goes on. Jenica writes about the patient expertise and what it is like to stay with sickle cell from a constructive standpoint, sharing recommendations and tips on taking care of the problem that she has acquired in her 30+ many years living with sickle cell.Click here to find out a lot more about Jenica.

Meridith O’Connor
wears quite a few hats as a affected person advocacy expert and is effective with a wide variety of stakeholders in the health care market. An avid author, Meridith is identified both nationally and internationally by quite a few organizations focused to patient empowerment, education, and support. Her penned work has been highlighted on various digital platforms and used to teach other folks about the continual disease community and advocate for these within. Meridith also frequently serves as an invited visitor speaker for local and countrywide corporations collaborating with nonprofit companies, academic establishments, and health care associations to encourage awareness strategies, advocacy initiatives, and donor relations. Master more about Meridith’s advocacy here.

Jessica Hanson is a NYC-dependent actor, singer, yoga teacher, conditioning teacher, social media manager, blogger, autoimmune illness advocate, and cat lover. Jessica was identified with celiac disease above ten several years in the past right after going through unexplained signs or symptoms for about 6 a long time. She’s been strictly gluten cost-free at any time since and operates the site Delicious Meditation: Tales from a Gluten Free of charge Kitchen area ( along with the NYC Celiac Condition Meetup Team ( She was later diagnosed with Graves’ Ailment and Thyroid Eye Condition and inside of the previous number of yrs has undergone a total thyroidectomy and orbital decompression surgeries. Continuing on her journey with TED, Jessica is hunting forward to her subsequent surgical procedure (a lid surgical procedure) in the new year. She hopes that by sharing her tale she can assist other people truly feel considerably less by itself. Study far more below Jessica’s influence in the autoimmune group.