<div>Dear friends, family, and kind supporters,
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<div>I never imagined I would be writing this.
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<div>Over the past two years, my life has been completely transformed by an unexpected and painful medical journey. It has tested me in ways I never could have prepared for.
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<div>What began as unexplained knee pain turned into a long and exhausting search for answers, and ultimately a diagnosis that continues to evolve.
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<div><strong>The Journey So Far</strong>
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<div>It all began in March 2023, when I started experiencing pain and swelling in my knee. I was referred to physical therapy, where my incredible therapist, Erin, quickly sensed that something deeper was going on. She worked tirelessly to help me stay mobile and encouraged me to keep advocating for myself.
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<div>Despite her support, my symptoms continued to worsen.
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<div>The pain spread throughout my entire right leg. Standing became unbearable. Walking, something I once did without thinking, became a daily challenge.
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<div>For nearly a year, I saw countless specialists, ruled out one condition after another, and lived in a constant state of uncertainty.
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<div>Then, in March 2024, everything changed.
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<div>A vascular specialist immediately recognized what so many others had overlooked. The birthmark I’ve had all my life was not just a birthmark. It was a critical clue.
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<div>I was diagnosed with <strong>Klippel-Trenaunay Syndrome</strong>, a rare and progressive vascular disorder that causes abnormal development of veins and lymphatic vessels. In my case, it explained the deep malformations within the muscles and tissues of my right leg, along with chronic pain, swelling, numbness, and small blood clots known as phleboliths.
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<div>In May 2024, I underwent surgery to remove the most damaged veins. While it was a necessary step, recovery has been far more difficult than expected. The swelling and nerve pain have persisted, walking remains difficult, and everyday tasks like standing, getting around, or working can feel overwhelming.
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<div>The emotional toll has been just as heavy. There are days where the frustration feels impossible to ignore. Simple things I once took for granted now require planning, energy, and sometimes help.
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<div>The uncertainty has been one of the hardest parts. Not knowing what each day will feel like or how my condition will progress makes it difficult to find any sense of stability.
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<div>At times, it has felt isolating. It is hard to fully explain what this experience is like, and even harder to accept how much life has changed in such a short amount of time.
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<div>But through it all, I am still here, still fighting, and still holding onto hope.
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<div><strong>An Important Update</strong>
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<div>As my care has continued, my medical team has determined that my diagnosis is more accurately <strong>Parkes Weber Syndrome</strong>, a related but more complex vascular condition involving high-flow arteriovenous malformations.
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<div>This distinction is critical. It directly impacts my treatment, long-term care, and potential risks.
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<div>Because of this updated diagnosis, I now require additional specialized care and genetic testing to guide future treatment and ensure the safest path forward.
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<div><strong>The Part That's Hard to Say </strong>
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<div>I have always valued my independence. Asking for help does not come easily to me, but right now, I truly need it.
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<div>Due to this condition, I can no longer work full time. Being limited to only a few working days each week, combined with mounting medical and living expenses, has become overwhelming.
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<div>Right now, I urgently need support to help cover:
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<li>Medications and physical therapy
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<li>Compression garments and mobility equipment
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<li>Travel to specialists and follow up care
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<li>Daily living expenses
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<li>Genetic testing that is essential for guiding future treatment and not covered by insurance
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<div>If you are able to donate, I am deeply grateful. Every contribution, no matter the amount, helps ease this burden and allows me to focus on healing.
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<div>If donating isn’t possible, sharing this campaign means just as much. It helps expand this circle of support and brings me one step closer to the care I need.
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<div><strong>A Message of Gratitude</strong>
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<div>If you’ve taken the time to read this, thank you.
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<div>Thank you for caring. Thank you for your support. And thank you for reminding me that I am not alone.
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<div>This journey has been long, painful, and at times isolating, but the love and kindness I’ve received have carried me through.
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<div>I am especially grateful to the team at University of Florida Shands Hospital, to Erin who never gave up on me, to Tamare, who has supported me through the emotional weight of this journey, and to Mellenee at k-t.org, who has been a guiding light through it all.
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<div>With love and gratitude,
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<div>Hannah
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Help Me Manage Parkes Weber Syndrome

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