Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days,…
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“Did a wolf attack your face?” That’s what the preteen asked my son Jonah, who was born with junctional epidermolysis bullosa, when Jonah approached their group to play whiffle ball. It was between his brother’s Carolina Wolfpack baseball games. Jonah was…
We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But two weeks ago, we had one of our worst weeks ever. It started on Tuesday…
This month, I want more diversity. I want to see more reality in the media and in advertisements and commercials. Show us real people who have stretch marks, scars, and imperfections, because that’s normal. Normalize different body types I want society to normalize different body types and to stop body…
My son Jonah loves baseball. He watches almost every Atlanta Braves game on TV and looks at MLB highlights on YouTube every morning. He plays it on PlayStation 4, with a plastic bat and rubber ball in the backyard, and with a soft ball and bat…
This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such connection existed on social media like we have today. Rare is many – but not always locally As EB is a rare disease, only a…
Like with everything involving epidermolysis bullosa, finding the best bandage routine for our son Jonah, who was born with EB in 2009, has been a process of trial and error. The same process certainly doesn’t work for everyone, but I’d like to share what has worked for…
Like many teenage girls, when I was younger I imagined what my future would look like. I pictured a wedding with a loving husband, a house with a white picket fence, and at least two kids. These kids had 10 fingers and 10 toes. They…
Dear Jonah, When you were born with epidermolysis bullosa, they told us there was an 85% chance you wouldn’t make it to your first birthday. But this past Saturday you turned 12. Twelve years old. There is a part of me that can’t believe you’ve…
A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something that doesn’t exist very often. But also, it’s something you should not forget about, something you shouldn’t oversee. Are we…
There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was younger, I would intercept the stares, block him with my body, and do the educating…
Jonah, my 11-year-old son who has epidermolysis bullosa (EB), is wounded from head to toe and must be covered in lifesaving bandages every single day. These bandages not only cover his current wounds, prevent infection, and promote healing, but also give him a layer of “skin” that keeps…
Recent Posts
- Double dose of Vyjuvek safely heals extensive wounds in woman with RDEB
- Searching for a faith community that fulfills our family’s needs
- Repurposing existing medicines may offer faster route to new EB treatment
- Approved psoriasis drug apremilast to be tested in severe EBS patients
- An unbreakable sibling bond that surprisingly resulted from EB