I went down a rabbit hole this morning reading my old blog posts from 13 years ago, when our son Jonah was born. I teared up as I read the prayers I requested on the eve of his birth. My husband, Matt, and I had lost our first son,…
Columns
It is vital to take care of your body, especially when you live with a health condition. Otherwise, you might not be able to function or do the things you enjoy due to pain or other symptoms. Because I live with epidermolysis bullosa, a rare condition that causes my…
Columns
An EB Q&A for Rare Disease Day
In light of Rare Disease Day on Feb. 28, I wanted to answer some common questions I am asked about my son Jonah, who has epidermolysis bullosa. This will be a pretty good column, but if you want to read something even cooler, you should head back to this…
We all grow up with certain beliefs about ourselves. Sometimes we don’t even question them. Other times, we may realize we were wrong all along. Or, we may choose to hold on to them. If our beliefs are positive, they could help us along our way. If not, they could…
It has been 13 years since we spent 32 days in the neonatal intensive care unit with our son Jonah, who was born with junctional epidermolysis bullosa. As the years have passed, the feelings, sounds, and smells of those days have faded. The beeping of the machines maintaining baby…
My son Jonah, 12, had oral surgery on Dec. 22, which involved a simple extraction and some coating on his teeth to make them smoother. For most children, this probably wouldn’t have been a big deal. But for Jonah, who has epidermolysis bullosa (EB), the surgery was disastrous.
Many people living with rare disease often worry about health issues, government support, insurance, and being accepted by society. But we may also face minor, everyday problems. I was born with epidermolysis bullosa (EB), a rare condition that makes my skin and mucus membranes very fragile. With the wrong…
“Does he even know that it’s not normal?” my friend Trent asked. He was referring to the fact that my son Jonah, once again, was getting to do some ridiculous, once-in-a-lifetime thing. This time it was attending the World Series. An anonymous donor had contacted a fellow EB dad to…
My husband and I knew we would have problems to contend with after our son Jonah was born with epidermolysis bullosa (EB). We’d have to think about things like wound care, bandaging, tube feeding, and weight gain. What we didn’t know was how creative…
Growing up with a rare skin condition, such as epidermolysis bullosa (EB), gives a person a lot to worry about and tends to make them want to have control over their environment. Because my skin is missing a certain collagen, the layers of the skin do not stick…
After more than 12 years of watching my son, Jonah, battle epidermolysis bullosa, and battling it myself as a caregiver, I have found myself becoming robotic, overly acclimated to our normal. I’m no mental health expert, but I imagine this has something to do with my…
In the spring of 2018, I was lucky enough to meet a member of the Bionews team (the parent company of Epidermolysis Bullosa News) at the European Conference on Rare Diseases and Orphan Products in Vienna. Brad, the director of columns, asked me if I was interested in…
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