How I advocated for my brother before and after his PSC diagnosis
“I can’t explain why, but I don’t feel well,” my younger brother, Osari, said. He was 32 years old at the time. That statement was…
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To test or not to test for PFIC3? Our families face the question.
The ripples of progressive familial intrahepatic cholestasis (PFIC) continue to spread throughout our family, as branches of the family tree are tested to see…
I didn’t pay attention to my health until it took a turn for the worse
Groundhog Day is probably my favorite holiday. It’s pretty noncontroversial, really. Unless you really hate winter, you probably don’t have any problems with Punxsutawney Phil…
The value of the yearly pediatrician appointment
For our family, the early months of the year are the season to visit the pediatrician. With both of my boys born in this period…
With so many specialists, scheduling appointments can be tricky
Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
My son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
My son’s fourth birthday is yet another milestone to celebrate
Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…
My son understands more about his Alagille doctor appointments
Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…
How I navigated my 2nd pregnancy as a carrier of PFIC type 3
This week I had an appointment with a new doctor to check on my health following my experience with intrahepatic cholestasis of pregnancy (ICP), a…
How I’m learning to cope with challenges as a rare disease parent
Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…
