Today is the last day of February, and with it comes an annual event hosted by the Global Genes Project. This charity is not specific to ichthyosis, but instead works to raise awareness and promote research and education for all rare diseases and disorders, of which ichthyosis is only one. Well, actually 32.
Today is [...]
Happy Valentine’s Day!
Today is one of those holidays that gets mixed reviews. For some, it is the most romantic day ever, full of flowers and chocolate and all things pink and red. For others, it’s a day to tell all their friends how much they are appreciated. And still others choose to ignore the [...]
Remember back when I wrote about how skin is supposed to work? One of the main jobs that skin does is to keep water inside our bodies.
Our bodies are about 60% water, and membranes isolate every cell into its own little world. The balance between inside and outside is maintained by a complex network [...]
This week, I came down with a nasty bug. As it happens, it was the first full day home after 2 weeks of holiday travel, dentist appointments and helping someone move into an apartment. Which meant that on the day I got sick, the tree was still up, Christmas gifts were all over the floor, [...]
One often-asked question we hear in various ichthyosis support groups is about prenatal screening for ichthyosis. If these disorders are so severe, why don’t we test for them?
I can think of five separate answers.
1. Compared to other genetic disorders, only a few children are affected with ichthyosis. 2. There are no ethnic risk [...]
2012 has been a good year for us. Jennifer and I consider this blog and the friends we’ve made and people we’ve educated through it to be one of our best accomplishments for 2012. For many years we had been talking about starting a blog about ichthyosis, and the fall of 2012 was when we [...]
Merry Christmas and Happy Holidays to all our readers. We’re in Cleveland with our extended family, and hope that your holiday season has been and will be a happy and joyous one.
We’ll return to more substantive blogging later on this week, with some thoughts about packing for long trips.
“No one has ever asked me that question before,” said the apartment rental agent.
I was stuck looking for a new apartment in the DC area, and for the past week or so I have been taking a whirlwind tour of numerous apartment complexes and otherwise being baited-and-switched following up on Craigslist ads and other [...]
Here in the US, we celebrate Thanksgiving, a holiday commemorating the survival of the early colonists after a rough first year, on the fourth Thursday in November. We spend the day with family and television specials are all filled with things that we should be thankful for: shelter, enough food, a stable income, friends, family, [...]