How I find healthy foods on a budget while living with MASH
Eating is one of my pleasures in life, especially when the food is good. However, my current diet is much healthier than it was when…
Columns
Preparing my son with Alagille syndrome, and myself, for surgery
Preparing a child for surgery is scary, as I’m being reminded. My 4-year-old son, Finley, is scheduled to have a small procedure to fix a…
I was terrified of forgetfulness and brain fog, so I took action
Last May, I turned 56. I feel OK about being in middle age, but I’ve long had fears about growing old. What I didn’t anticipate…
Sometimes I wonder what ‘stable’ means regarding my son’s health
Rare diseases bring a lot of unknowns to the lives of patients, caregivers, and family members. We caregivers often worry about what might be looming…
Why it’s important to participate in medical studies about MASH
Before I learned I was pregnant, I used to participate in medical studies to earn a little extra money. Living in a city with two…
My son has his own understanding of his liver disease medications
Every time I meet another family raising a child with Alagille syndrome, the topic of medication comes up. I have found that parents and…
The benefits of having a pet while living with liver disease
In my nearly century-old house, most of my floors are hardwood or tile. In 1929, brooms did the trick, but my two cats, though short-haired,…
A big-boy bed has been a positive change for our son with Alagille
Bedtime has been tricky in my house over the past few months. My son Finley, who was born with Alagille syndrome, just doesn’t seem…
How weight loss can benefit those of us with liver disease
This week, I was on the hunt for a party dress for my 14-year-old daughter, who was invited to her best friend’s birthday party. I’ve…
Letting go of worry on our Universal Studios vacation
Traveling with young kids is always a bit of a gamble. Now that my boys are 7 and 4, they’re a heck of a lot…
Recent Posts
- Better to have Kasai surgery before liver transplant for biliary atresia
- All spots filled in trial testing Vir’s combo treatment for hepatitis D
- Most recent liver stiffness test best predicts risk of PBC progression
- Novel gene mutation is likely cause of newborn’s rare liver disease
- Quitting drinking was the best decision I ever made