My name is lucy, and I am 24 years old. I am facing serious, life-threatening medical concerns as a complex chronic illness patient. My journey has been shaped by multiple diagnoses, including a systemic genetic connective tissue disorder and a rare chronic blood cancer called polycythemia vera. Navigating these conditions has been incredibly challenging, both physically and emotionally, and I am reaching out for support during this difficult time. 
 
 
 
 The financial burden of my medical care has become overwhelming. I need to see an EDS specialist in my area who is able to provide the cutting-edge care that is essential for my survival and, hopefully, for regaining some quality of life. Many of these costs are out of network and not covered by insurance, and the funds raised will help me continue receiving the treatments I need with this specialist, to the extent that I need them. In addition, most of my doctors and treatments are based in Baltimore, which means frequent travel and additional expenses for procedures and appointments. Every contribution will help me access the care I need and ease the financial strain on my family and me. 
 
 
 
 Thank you to everyone who has been following along on this journey. Your support in all forms—especially the kind words and validation I’ve received from friends and people I’ve never met—means so much to me and has motivated me to keep fighting and sharing my story. I hope you all know how loved and valued you are by me, and within the world. Your generosity and encouragement give me hope, and I am deeply grateful for any help you can offer.

Jane Towler

KEVIN BALFE

Debra Marshall

Mariana Baez Ponce

Martha Wise

Dana Doonan

Anonymous

Joaquin Moreno

Kathleen Stone

Ildiko Gal

Alice Trembour

Jennifer Gardner

Valerie Foote

Barbara Hoover

Aliandra Starre

April McDowell

Marie-Christine Hoover

Marie Maurer

Ashwini Deshpande

lucy's fight against chronic and rare diseases

lucy's fight against chronic and rare diseases

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