Claire Brinkley’s daughter Eleanor is diagnosed with progressive familial intrahepatic cholestasis (PFIC) which is a rare disease affecting the liver. As a newborn, she appeared perfectly normal. But at three months old vaccines left her severely bruised. She also had a severe itch that could never be relieved. She wasn’t able to sleep because of it.
Later, the family found out this was a symptom of PFIC. But before diagnosis, and even after, Claire felt confused, scared, and alone in a new world without answers.
The family was told by specialists in the UK that it was unlikely any doctors at their local hospital would have even heard of this disease. Claire felt so alone. She couldn’t even find a support group to join. She couldn’t find a space to get her questions answered.
The only thing Claire was coming across was a few negative stories from older children with the disease. She knew Eleanor would have to have a liver transplant, and there were so many things she needed to know. She also needed hope.
Eleanor is now 11 years old, and Claire finally feels like she has a community.
She was connected with the Children’s Liver Foundation which hosted in-person events. She then found an online forum called PFIC Voices, specific to her child’s disease.
Claire also joined two Facebook groups- UK Liver Parents and Families and Liver Mums.
Not only has Claire found the support she needed, she is now able to share her child’s story with others. Eleanor had a liver transplant when she was 6 years old, and Claire loves that she can be the voice for others that she needed years ago.
The groups share their day to day experiences with the disease, vent about the stressors, find comfort, share strength, and spread positivity with one another.
This type of online support system is not unique to PFIC, with groups spreading like wildfire over social media for specific diagnoses and rare diseases. In the time of COVID, this kind of remote support has become even more valuable.
One of the many challenges that has come with the COVID-19 pandemic is the need to prioritize essential medical appointments. Patients and families in the PFIC community were stressed at the onset and used their support groups to discuss the new challenges.
Claire explains that she has found a special bond with these PFIC families who have shared such similar experiences as she has. Even during COVID-19, she has felt connected, secure, and hopeful for the future.
You can read more about Claire and her experiences here.