I feel kind of miserable right now, but I’m not entirely how much I should be blaming isotretinoin, also known as Accutane and other names.
I’ve been taking 40 mg/day (0.6 mg/kg/day) since last Monday night, so it’s been one week since I’ve been on the drug.
My skin is starting to peel. My face [...]
So…. we are eight weeks into school. Three of my kids have teachers new to both the school and the district, so we had to go through the whole spiel back on Meet the Teacher night. The oldest one is finally at the point where he can more or less advocate for himself, especially with [...]
We’ve had a couple of long days at home dealing with some household issues, so after the kids went to sleep last night I poured myself a nice glass of wine.
I can think of few real “nice” things about ichthyosis, but it’s certainly convenient to have a jar of Aquaphor or Cetaphil in [...]
The restaurant diners looked up from their meals and stared at Monkey and me as we raced through the restaurant. He wasn’t subtle by any stretch of the imagination — he was waving his hand up in the air hollering “Eeeeeeeyow ow ow ow OWWWWWWW!” as he wound his way through the dining area.
We’re starting a new project here, and if you have a form of epidermolytic ichthyosis, we’d like you to share with us and our readers how you take care of your hands and feet. We will collect, curate and then publish the responses on our blog here, with as much advice specific to each individual [...]
Now that the kids are all school-aged, slow-moving baby bikes have gone by the wayside. Just because they have ichthyosis doesn’t mean they don’t have typical kid desires. It has been a challenge to strike the balance between keeping them safe and letting them do things with their peers. One point of conflict has been [...]
One of the big challenges we’ve had over the years is letting our kids do normal things with the neighborhood kids. All summer, the boys are challenged by the heat in the afternoons and mosquitoes in the morning or dusk hours. We need to watch them carefully when they’re out in the summer heat, since [...]
School started yesterday. School, for us, starts at 7:40 in the morning. This creates a bit of a problem for our family, since we need to get all three boys bathed and out the door before daylight.
The summer sunshine makes things worse. Up until last week, it was still somewhat light after 9pm. All [...]
We are excited to have SooAnn Roberts Pisano join us today! SooAnn is the mother of two boys with two different forms of epidermolysis bullosa and is an active voice in advocacy for those with disabilities.
We’re all guilty of doing it. There might be at least one occasion that stands [...]