A Natural Advocate
A natural advocate: Sharon lives in Canada with her 4 year old daughter who has PFIC 1 who had a liver transplant last year. Unfortunately, Sharon’s daughter has had many complications post-transplant. Her family has spent more time at SickKids Hospital in the last year than at home. You want to know one of the most unique challenges that Sharon tells me she faces? Keeping up with her daughter. Being a long term patient doesn’t seem to bring her down (on the “good” days). In between procedures, she sings karaoke, has dance parties with nurses, hangs out with the amazing child life specialists, and interviews her surgeon.
Children’s hospitals really are amazing places. They are filled with pain, but they really do go above and beyond to try and provide a sense of normalcy for children who need to be there.
While Sharon is balancing her full time remote job from the hospital, along with taking care of her daughter while she is an inpatient, she has found time to advocate. In 2018, Sharon noticed that one of the main websites in Canada that had liver disease information did not have any information about PFIC. Through her outreach, she worked with their team to publish information on the disease back in 2019. She kept in contact with the team at liver.ca and managed to encourage an update based on more recent findings. Because of her persistent advocacy, just last week liver.ca published basic information on 2 more PFIC subtypes. She remains in contact and is already planning to work with the team next year to publish information on even more rare subtypes.
PFIC may be rare, but to us it’s everything. The details that may not be of highest priority most, are the most important details to our rare community. Because of Sharon’s advocacy, and willingness to reach out, patients or families who connect with liver.ca will find information on PFIC. Not only will they find information, but they will find ways to connect. A connection that we know, is powerful.
I’ve been in Sharon’s shoes. More time in the hospital than at home. It can feel hopeless, powerless and frustrating. When you do something to bring awareness to the disease in these moments where the disease may be winning, you feel hopeful. That feeling can not only turn your day around, but inspire hope within the rest of our community.
A huge shout out to the folks at liver.ca for being open to updating their website and working in collaboration to make these important additions to the information they provide.