Meet Ana.
Inspiring. Dedicated. Passionate.
Learn about how Ana has been impacted by histiocytosis and why she is so deeply passionate about helping the rare community of patients and families affected by histiocytic disorders.
I am 37 years old, a single mom of a silly and handsome 6-year-old boy, and a histio warrior. My symptoms started in the last trimester of my pregnancy. I was thirsty, dehydrated all day, and lost over 30 pounds. After many months, many embarrassing accidents, quite a few tests later, and being wrongfully diagnosed with other illnesses, I was finally diagnosed with diabetes insipidus (DI). Although I was being treated for DI, I was still getting scans and being referred to many specialists to find the cause of the DI and symptoms (headaches, dizziness, fatigue, bone pain, & limping). My journey continued with my pituitary being radiated, having several biopsies, and traveling to other states to see Histiocytosis specialists. I was at my wit’s end after discovering they never should have radiated my pituitary, and several tests that needed to be ordered to properly diagnose weren’t ordered. I needed answers, a formal diagnosis.
Fortunately, my insurance changed, and I was referred to a Histiocytosis specialist, who not only lived in the same state, but ordered the correct scans and proper testing. It took nearly three years to get formally diagnosed.
I have Langerhans Cell Histiocytosis (LCH) with pituitary and bone involvement. The LCH in my pituitary caused hypothyroidism and adrenal gland insufficiency.
This journey has been long, full of uncertainty, pain, emotional and physical changes. I’ve had to face this process while learning how to be a single parent.
I’ve learned how to reframe the narrative for myself vs focusing on how hard this is. I’ve learned to draw from faith that God gives me strength, energy and power to face each moment, and learned how to connect with family. I want to share with you that Histiocytosis has shaken the foundation of who I was, my priorities, things that defined me. I learned that treatment is not just chemo but what you are giving to yourself to heal yourself. What am I telling myself? How am I narrating my life despite histio. I’ve learned to also redefine hope. Hope in this moment, in this single breath. Hope in focusing on what I do have right this second. Having tenacity for this moment! Hope in being present with myself, my son, and a growing desire to deposit hope to my fellow histio community.
I was delighted when I first discovered the ambassador program with the Histiocytosis Association, as I have a passion to connect with others and help the histio community. Having a rare disorder can be a lonely and emotional journey. My hope is to unite the community, raise awareness, and raise funds for research and families in financial hardship. I want to use my personal journey and the skills I’ve gained throughout these five years to help, empower, and uplift our histio warriors.
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You can learn more about Langerhans cell histiocytosis and other histiocytic disorders by clicking on 'What is histiocytosis' - located on the right navigation under Why We Walk.
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