Julia is a young lady who just celebrated her 17th birthday. She is an extremely dedicated and gifted student, a member of the National Honor Society, and has been on the principles list during every quarter of her high school years. She just started driving, which she loves, is an experienced trapeze flyer, and she hopes to someday be a Forensic Anthropologist.
I met Julia about 6 months ago when her mother reached out to me for advice. Julia had been struggling with intense itching on and off for that last few years. She was in and out of Dermatologist’s offices and doctors who continued to prescribe lotions and medications for her itching without relief. Finally, she was referred to a specialist who through bloodwork realized that there was something going on with her liver. Since then, Julia has been in and out of the doctor receiving multiple tests, biopsies and sometimes weekly blood draws to try and find an answer. Early on, specialists believed that she may have a form of PFIC, which is how she found pfic.org. Her mother connected with me while waiting for genetic testing results to confirm a diagnosis. We talked through the horrors of itching and fears of liver disease while waiting for Julia’s diagnosis, sharing stories of our journeys. In sharing my experiences with pruritus and liver disease and seeing the stories that others have shared on our website, Julia and her mother didn’t feel so alone, they felt validated. This is not “just an itch,” the burden that they felt was real.
In the brief time that we have been connected, Julia got to know our small community. Even though she was going through her own struggle, she couldn’t help but think of what our children and families go through who are struggling with PFIC and the awful itching. Julia decided to write a letter to her teacher saying that she would like to find a way to help our rare community. She was then connected with the Franciscan Youth Movement group in her school. Upon joining this group, Julia shared with her peers her recent and ongoing medical journey and about our PFIC community that she had met along the way. She urged the group to find a way to support the children and families who are suffering with PFIC.
Julia’s will to help has inspired a movement within the school. Now, thanks to Julia and the Franciscan Youth Movement club, we have more than 30 letters of support that were written by a group of teens that are intended for patients or family members who are struggling with PFIC. These letters will be sent out to our community with our personalized care packages throughout the year.
Julia has not been able to receive a diagnosis yet, but after further testing her doctors do not believe that she has PFIC. She is continuing to bounce from doctor to doctor go through test after test in hopes to find an answer. Even though she is not believed to have PFIC, she has said that she is invested in helping our community in the future. Even though she is not believed to have PFIC, we are invested in supporting her through her journey with guidance, mentorship and friendship as she moves through her journey. Please keep Julia in your thoughts as she searches to find her answers.
If you would like to nominate a patient, caregiver or family member to receive a letter of support from the Franciscan Youth Movement group along with a care package, you may order one in our online shop. Please write “Julia” in the comment box so that we can show her and her youth group just how many families their kindness has supported.