In honor of World Rare Disease Day, the Patient Leader Network sat down with fellow rare disease patient leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to discuss the importance of resiliency, managing your own care, story sharing, and raising awareness to support the rare disease community.
We had an incredible conversation with our three panelists discussing the empowerment of sharing their experiences living with a rare condition. They shared how they wish people understood the emotional toll living with a health condition has on themselves and their loved ones. As well as, how hurtful and dismissive the phrase, “well you don’t look sick” feels. Lastly, they ended the panel by reminding us that sharing our story can make an immeasurable difference in the rare disease community.
Meet the Panelists
Jenica Leah is an award-winning author and blogger as well as a speaker living with Sickle Cell Anemia. Since being diagnosed with sickle cell at 6 weeks old, Jenica has battled with the many complications that come with the disorder such as stroke, acute chest syndrome, avascular necrosis in both hips — the list goes on. Jenica writes about the patient experience and what it is like to live with sickle cell from a positive perspective, sharing tips and tricks on managing the condition that she has learned in her 30+ years living with sickle cell.Click here to learn more about Jenica.
Meridith O’Connor wears many hats as a patient advocacy specialist and works with a variety of stakeholders in the healthcare industry. An avid writer, Meridith is recognized both nationally and internationally by several organizations dedicated to patient empowerment, education, and support. Her written work has been featured on numerous digital platforms and utilized to teach others about the chronic illness community and advocate for those within. Meridith also frequently serves as an invited guest speaker for local and national organizations; collaborating with nonprofit agencies, academic institutions, and healthcare associations to promote awareness campaigns, advocacy efforts, and donor relations. Learn more about Meridith’s advocacy here.
Jessica Hanson is a NYC-based actor, singer, yoga teacher, fitness instructor, social media manager, blogger, autoimmune disease advocate, and cat lover. Jessica was diagnosed with celiac disease over ten years ago after experiencing unexplained symptoms for about six years. She’s been strictly gluten free ever since and runs the blog Tasty Meditation: Tales from a Gluten Free Kitchen (tastymeditation.com) along with the NYC Celiac Disease Meetup Group (meetup.com/celiac). She was later diagnosed with Graves’ Disease and Thyroid Eye Disease and within the past few years has undergone a total thyroidectomy and orbital decompression surgeries. Continuing on her journey with TED, Jessica is looking forward to her next surgery (a lid surgery) in the new year. She hopes that by sharing her story she can help others feel less alone. Learn more here Jessica’s impact in the autoimmune community.