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Erin Lambert (She/Her)

State: Hawaii

Chronic Conditions: Postural Orthostatic Tachycardia Syndrome (POTS), Hypermobile Ehlers-Danlos Syndrome (hEDS), Small fiber neuropathy (SFN)

From an active childhood to a devoted hiker and Pilates enthusiast in my twenties, things turned unexpectedly in late 2019. Energy levels plummeted, and once joyful activities became a struggle. By early 2020, a racing pulse and shortness of breath led to admission after an emergency room visit. Additional visits and testing confirmed Postural Orthostatic Tachycardia Syndrome (POTS). Ever inquisitive, I delved into research and discovered the strong correlation between POTS and Ehlers-Danlos Syndrome (EDS), confirming my overlapping symptoms and ultimately leading to my Hypermobile EDS (hEDS) diagnosis. Then, in 2023, tingling on my left side with intermittent pain marked the onset of Small Fiber Neuropathy.

One challenge that I've faced is the disbelief surrounding my illness, fueled by a portrayal of outdoor activities on my social media. Comments about my hobbies became particularly sensitive, reflecting the challenges of living with an invisible illness. While not every day is terrible, the grief for my past active lifestyle persists. Yet, I'm learning the importance of self-compassion and acknowledging my limits while pushing boundaries when possible.

Presently, I work part-time with intermittent FMLA. I also attend college with the support of the Kokua program, which provides essential accommodations.

I wish to give others hope and that my stories help them navigate their journey. By coming together, we can drive meaningful change and create a future where individuals with chronic illnesses are not only understood but also provided with the support they need. As a Chronic Disease Coalition Ambassador, I am committed to contributing to this vision, fostering a community where empathy and understanding shape policies that prioritize the well-being of those navigating the challenges of chronic conditions.