Early this week, Laurie wrote with great insight that there’s really no such thing as an “unaffected” sibling. While those siblings may not directly face the physical and sometimes mental challenges of their affected sibling, their lives are altered as the entire family works their lives around the new normal. As adults, we see what [...]
A few days ago, Jennifer said to me, “I don’t know how to tell this story without making us look like idiots.” And we’ve been wrestling with that for almost a month now. I think the honest answer is really, “Yes, we were idiots.” And maybe part of blogging about life with ichthyosis is being [...]
Earlier this week on Facebook, we saw an excellent post from Laurie Fiore as part of Ichthyosis Awareness Month. Two of Laurie’s children have a form of ARCI. Taking a page from Carly’s project, we asked Laurie for permission to re-publish her post on our blog here, because with the passage of time, this type [...]
By now, over 270,000 people have seen a picture of Rachel’s foot, thanks to our question and answer session on Reddit three weeks ago. Much less visible was this other photo back around Halloween night. If you compare the two photos, you might notice that the thickness of the skin appears very different between the [...]
What’s the quirkiest thing you’ve ever seen a teacher do?
This month, I began co-teaching a class at Georgetown, as an Adjunct Professor in their School of Continuing Education. It’s the first formal class I’ve taught, and part of me wonders how I’m doing. The students are, for the most part, very engaged, although a [...]
Today we are pleased to present a guest post from Kyriaki, a friend from Down Under who we met online. What is it with articulate Australians advocating about ichthyosis online?
I grew up with people judging me for my looks, especially in summer. Not just when I was older and judged by my peers, [...]
Every time we visit a fast-food restaurant with a climbing play structure, I have to make a call: shoes or no shoes. There is a almost always a sign next to the contraption instructing the kids to take off their shoes and warning that socks must be worn. Most likely, this is for safety — [...]
Jennifer recently asserted on Facebook that my “idea of cooking is a frozen pot pie”. I can’t argue too strongly with that on most days, although my culinary skills really do go beyond button-pushing on the microwave oven. Honest!
A couple of nights ago, I broiled some hamburgers in the oven. Opening the package of [...]
I wanted to follow up on Jennifer’s post from Tuesday on transepidermal water loss in people with ichthyosis.
I think, beyond the clinical and day-to-day issues, there’s a really fascinating story buried in there about how actual science takes place.
One of the really wonderful things about the FIRST family conferences is seeing all of [...]