Young woman helps develop foundation for Crohn’s patients
As a child, Stephanie Smith was often accused of hiding in the bathroom to gain attention.
“It was frustrating,” says Stephanie, who was scolded and made fun of for her frequent trips to the bathroom. “My parents would joke, saying I was working on a book in there, rating bathrooms across the world.”
“There wasn’t enough research behind Crohn’s disease [at that time],” says Stephanie. “And it’s rare for little kids to show major symptoms of it.” In the end, the “attention-seeking” explanation was the easiest for Stephanie’s parents and doctors to comprehend.
Finally, at age fifteen, Stephanie was officially diagnosed with Crohn’s disease, an autoimmune inflammatory bowel disease that affects the gastrointestinal tract and includes symptoms such as persistent diarrhea and constipation, abdominal cramps, joint pain, fatigue, intestinal and joint inflammation, and rectal bleeding.
Now, more than ten years after Stephanie began treatment, her Crohn’s is at last considered in remission.
“You would think remission means you have no symptoms,” says Stephanie, but that’s not the case. “I’m twenty-six, and I feel like I’m a ninety-year-old woman some days. I wake up with joint pain, and my hips crack all the time. Crohn’s can affect things like fertility—I don’t know if I’m going to be able to have a child.”
Life with Crohn’s is often bewildering at best and excruciating at worst. To help others navigate life with the disease, Stephanie joined an international team last fall to launch The Crohn’s Journey Foundation (TCJF), a nonprofit focused on improving Crohn’s patients’ quality of life by offering retreats, information, camaraderie, and scholarships to those with the disease.
“Stress is the biggest trigger,” says Stephanie, the foundation’s director of development, so TCJF is hosting its first retreat this September in a tranquil location just outside of Los Angeles, California. Participants and their guests—typically family members, close friends, or significant others—will take part in yoga classes, share stories, and learn how to “cook with Crohn’s,” says Stephanie.
TCJF is currently raising money to send people from all over the world to its retreats and hopes to soon offer scholarships to Crohn’s patients who can’t afford their medication or hospital bills.
“The whole disease is pretty hard to understand, unless you’re going through it firsthand,” says Stephanie, “so we’re hoping to build a tight-knit community in which people can share their thoughts and feelings and get the support they need.”
For more information on the The Crohn’s Journey Foundation or to donate, visit http://thecrohnsjourneyfoundation.org/.