Story Sunday: Diagnosis – Lisa & Cadence
Welcome to Story Sunday. Each patient/family story will fit a certain theme around PFIC and the challenges of this rare disease. Some more subtle challenges like vitamin deficiencies or post transplant issues often go unseen, but Diagnosis and Itchiness are at the forefront. We want to bring attention to every challenge this rare disease causes.
For the first installment of Story Sunday, we cover Diagnosis. We interviewed one of our fantastic community members, former board member, now PFIC Network Program Associate, Lisa Crompton.
Cadence, Lisa’s daughter, has PFIC 2. She was diagnosed with PFIC when she was 2 years old. Now 13, Cadence is one of our best advocates!
Cadence was diagnosed in April of 2011, but leading up to diagnosis was a rocky road. Cadence was only 5 months old when she started bruising, she was growing very slowly and was having digestive issues. These were the initial signs/symptoms that caused Lisa to realize something was wrong. One of our driving factors at the PFIC Network is “time to diagnosis” and we want this to be as quick as possible. It took nearly 2 years for Cadence to be properly diagnosed.
We asked Lisa, ‘When you received your diagnosis, what feelings and thoughts did you have?’ She replied “Scared, alone, left wondering what kind of life she was going to have. I was 3 months pregnant with her sister at the time and was worried she would also have PFIC.” Fortunately, Cadence’s sister does not have PFIC, but that is not the case for some families.
Having a rare disease that no one has heard of, that no one can see, that doesn’t always show outwardly, is difficult. We wanted to know, “Do you ever feel misunderstood or hopeless because people think you/your child “look fine”?
Lisa’s response is probably one that parents can relate to, saying “I felt it in a different way, not so much because she looked fine, but more because of all the cuts/soars she has caused by the itch. ‘Are people going to think she is a “dirty kid” because she constantly itches or has cuts all over her face?’ ‘Does everyone think I am a bad parent because of the bags under her eyes from not sleeping’….there have definitely been many dirty looks….”
To end each Story Sunday, we wanted to ask the same question. ‘What is one thing you want people to know or understand about PFIC patients?’
“What the disease does to these poor kids, how it affects their everyday lives, and back when she was diagnosed 11 years ago, the lack of support there was and how important the PFIC network is to me, my family and future families.”
We are so happy to have Lisa as such a large part of our team, and that the PFIC Network was able to be of support and help her and Cadence over the years. We hope we can do the same for each and every one of our community members.
Keep on the lookout on our Facebook next weekend for installment two of Story Sunday.