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Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Weekly Warrior: Meet Keyla

August 23, 2024 Laura Mullen

Our latest Weekly Warrior is Keyla, who shared her story with us recently.

“Hi, I’m Keyla, I’m 38 yrs old and I have Crohn’s Disease, and I am a
care partner to a 13-year-old with UC. I also have Thoracic Outlet
Syndrome, Endometriosis, and a permanent ostomy bag, and I am a
Uterine Cancer survivor. My symptoms began as a child but was
never officially diagnosed until I passed out at work as an adult and
realized I needed to be seen by a doctor. I was first misdiagnosed with
a food allergy and was told to change my diet. For a year I followed a
strict diet but still wasn’t well, so I went for a second opinion at a
larger hospital and that was when they officially diagnosed me with
ulcerative colitis. After taking medications for 2 years, my UC was
fairly under control until I was diagnosed with Uterine Cancer. So at
30 years old, I had a hysterectomy and that was where my health
declined. Having failed every medication possible I decided it was
time to evict my colon. Four years ago; I began my surgery journey
with IBD where I had a 2-phase jpouch procedure; after a year I was
told it failed which lead to the removal of my jpouch and leaving me
with a permanent ileostomy bag. After a year of no symptoms, I began
to experience bloody stools and was told I now have Crohn’s Disease.
Now, 2 years later, my IBD is under control. But, looking back at my
journey, my struggle, how far I’ve come, and what my future might
hold. I know that I am more than capable of fighting my way thru
whatever lies ahead and that this condition has a higher purpose for
me.”

Filed Under: Patient

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