New online group connects and supports Spanish-speaking FOP community

Like many people with FOP, 26-year-old Paulina Gutierrez had a frustrating and painful diagnosis journey. Unfortunately, it was made worse by a language barrier.

Born in Guadalajara Jalisco, Mexico, Gutierrez and her family moved to California, when she was 15. After falling and injuring her leg in gym class, Gutierrez began experiencing a lot of pain on her left side and was unable to put on her jeans, sock or shoe. Because she was uninsured in the United States, Gutierrez returned to Mexico for treatment. After X-rays and several tests, doctors ordered a biopsy of what they believed was a tumor. Gutierrez would undergo four surgeries before another round of tests, a new doctor, and finally, an accurate diagnosis.

“I would describe my FOP experience as challenging because before knowing about FOP, I did most everything a normal person could do. I had a perfect childhood. My fall in high school changed everything.”

Gutierrez struggled to find resources in her native language. Eventually, she discovered the IFOPA. At last year’s Family Gathering, Gutierrez met other Spanish-speaking FOP families. They discussed similar difficulties. Gutierrez thought about how she could make a difference, and earlier this year, launched the Ifopers Latinos group on the messaging app WhatsApp.

“I was so inspired to start the group because something in my heart told me I had to help them get the right information and meet more people with similar experiences,” said Gutierrez.

Using the app, Spanish-speaking individuals could share information to better understand and navigate FOP. Before long, members suggested Gutierrez create a Facebook group where even more people could come together.

With support from family and friends, she took the advice. Today, the Ifopers Latinos Facebook group is 115 members strong — a significant jump from the original seven. Gutierrez is planning to expand to Instagram and Twitter to unite an even bigger community throughout Mexico and Latin America.

The response has been so beautiful and interesting, since little by little, everyone has been meeting patients from their same and neighboring countries,” said Gutierrez.

The experience has helped Gutierrez better understand FOP and how it affects each person differently, often depending on when someone is diagnosed. She is determined to get more people talking, so others do not have to endure unnecessary procedures, isolation and other common challenges.

“My hope is that people with FOP who speak Spanish connect with us, so they know they are not alone, and they get the right information,” said Gutierrez. “We have created a family, and we hope more will join us.”

Paulina and her group are also working with the IFOPA to translate and share more programs and resources with a bigger Spanish-speaking audience. Thanks to their efforts, individuals from around the world, who traditionally struggled to find information, are getting much-needed answers and support.

Learn more about Ifopers Latinos on the group’s Facebook page, and be sure to share the link with someone who speaks Spanish and would be interested in joining.