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By Rachel See, on June 17th, 2013 My feet did a good job of throwing a wrench into part of our weekend plans. We were planning on trying to do some tourist-y stuff in the DC area on Sunday, and I had vague aspirations to do better than our Cherry Blossom Death March a couple of months ago. But this time, we didn’t get out of the gate.
But at least I got a shiny new Dremel, much fodder for a blog post and a great explanation / demonstration on how I use a power tool on my feet. (We previously wrote about power tools as personal skin-care devices, but now we have pictures.) Read on for more!
Continue reading Drill, Baby, Drill: Why we bought a third Dremel on Father’s Day (or, Power Tools and Ichthyosis Care Revisted)
By Rachel See, on June 12th, 2013 Last October, we wrote about media coverage of Soledad Atzompa, a tiny village in Mexico with an astounding number of cases of lamellar ichthyosis, a form of autosomal recessive congenital ichthyosis (ARCI). We further speculated that the village could be suffering from the “founder effect”, caused when an isolated population in a fairly small community can trace their ancestry back to a single or just a few individuals. (Read our original article for an in-depth explanation of the founder effect.)
On May 25, El Mundo de Orizaba reported that 37 people from Soledad Atzompa and other nearby communities had recently received treatment at the Sanitary District No. 7 in Orizaba.
Continue reading Update on the Mexican village plagued by the founder effect
By Rachel See, on June 11th, 2013 I think I’m just about recovered from my weekend jaunt to Dallas. (If you haven’t done so already, check out the transcript of my liveblog of the FIRST Dallas regional conference.)
But rather than just leave you, faithful readers, to sift through my stream-of-consciousness and typo-laden liveblog, I thought I’d write here about things that I, personally, took away from the Dallas conference. (Also, if you have any feedback for ways in which I could have improved the liveblog, please let me know!)
Continue reading What I learned at the FIRST Patient Support Forum in Dallas
By Rachel See, on June 8th, 2013 Thank you so much to everyone who joined my liveblog of today’s FIRST Patient Support Forum / Regional Conference in Dallas. The views (and participation from online viewers) really exceeded my expectations. Some of the discussion in the room was hard for me to follow (at one point three or four separate conversations started at once), but here, in all its almost totally unedited and typo-laden glory, is the liveblog transcript.
There are some great moments buried in there, which hopefully we’ll have time to summarize or otherwise talk about in future blog posts. But in the meantime, if you didn’t view the liveblog as things were happening, check out the transcript (and some of the pictures)!
The two Moes from FIRST are heading back to the FIRST office, but I know they took a few additional pictures of the crowd which I’m sure they’ll share soon, too.
Continue reading Liveblog Transcript: FIRST Dallas Conference / Patient Support Forum (6/8/2013)
By Rachel See, on June 8th, 2013 Rachel’s liveblog of the FIRST Dallas Regional conference is now over, but we have made the full transcript available in a new post.
By Rachel See, on June 6th, 2013 I will be liveblogging the FIRST Dallas Regional Conference on Saturday, June 8. The conference starts at 9:30 AM US Central Time (14:30 UTC/GMT, 15:30 BST, 0:30 6/9 AEST (sorry, Aussies)), so please join me here on the blog during the conference for live updates. You can submit questions for the presenters here on confettiskin.com. If you join the liveblog on Saturday, I’ll try to relay questions to the panelists and the room.
UPDATE 6/8 @ 19:15 ET: The conference is over, but you can access the full transcript of the liveblog (complete with pictures).
I’ve written here about why I am attending the Dallas Regional Conference. But even if you can’t make it down to Dallas on Saturday, hopefully our live blog will be the next best thing.
FIRST has also announced (some) details for regional meetings in Cincinnati on August 10, San Jose on September 7 and Kansas City on September 21. (There’s also an entry for New York/New Jersey on August 3 but no event pages yet.) Details for these meetings appear to only be available (for now) on Facebook, so if you can’t get at the linked information let us know and we can help you out.
Continue reading Questions for Saturday’s FIRST Regional conference?
By Rachel See, on June 5th, 2013 Monday’s guest post by Chandra Rogers about how her Aquaphor-laden clothes started smoldering (and could have caught on fire) got me thinking: Were there any other reported instances of Aquaphor catching on fire? After we published Chandra’s post, I did a quick Google search for “Aquaphor combustion” and saw a scientific study published about the use of Aquaphor in high-oxygen environments such as neonatal intensive care units.
Reading through that article and reviewing some of the products and other literature cited in it led me down a very odd path. So today I’m writing not just about fire-safety issues and Aquaphor (an issue near and dear to our heart since we use a lot of Aquaphor), but also how Jennifer and I evaluate and assess scientific publications, the marketing of creams and lotions, and other assertions of reliability in our daily lives.
Or, put another way: Ichthyosis care? Check. Evaluating science? Check. Internet marketing/media issues? Check. Sure sounds like a Confetti Skin blog post to me!
Continue reading Aquaphor combustion, fire safety and critical-thinking skills
By Jennifer See, on June 3rd, 2013 Today our friend Chandra Rogers shares her tale of laundry woe. Chandra has a form of ARCI, and her laundry incident happened in 2005, but we think it’s important to share since so many of us use petroleum-based ointments and creams like Aquaphor, Vaseline and Hydrophor. Chandra’s story was originally reported in a 2005 edition of the FIRST newsletter, but Chandra wrote this version for our blog.
Most people can wear clothes more than once before washing them. That’s not possible for those of us with ichthyosis. Our skin makes us susceptible to infection and coating ourselves with typically petroleum-based moisturizers makes dirty clothes into bacteria factories. We usually wear something once, then launder it.
One attribute I have that’s not normal, though not a medical anomaly, is a keen sense of smell. My husband calls it my “canine nose.” One night that nose possibly saved our lives.
Earlier that day, my husband JR washed lots of laundry in the apartment complex’s laundry room. He brought the unfolded clothes up in baskets and left them near the couch for me to fold. I’m terrible with folding clothes, so they sat there most of the day. Several hours after he’d finished, I started smelling something burning. It was similar to plastic but not quite. The smell was nauseating. I wandered around sniffing everything. Furniture, carpet, the dogs, even behind the refrigerator. I laid my hand on walls checking for heat. At first JR couldn’t smell anything but after a while, when I was still searching, he suddenly began smelling it, too. We hunted through the apartment, sniffing like tracking dogs but we couldn’t find the source. We even tested the smoke alarm, which was working but not going off on its own.
Continue reading Spontaneous Combustion of Aquaphor-Laden Laundry
By Rachel See, on May 30th, 2013 Megan has started blogging and her first post, Me Against the World, and by World, I Mean Doorknobs, is an awesome piece of writing. Check it out if you haven’t seen it already. (I’ll wait.  )
I’ve blogged about my pickle jar fight but I haven’t really gone into more detail about my own dexterity issues.
Megan has a form of epidermolysis bullosa; her symptoms are a bit different than my form of ichthyosis but it seems we share the same aversion to doorknobs.
For me (and the boys), our issue is that the thick buildup of scale on our hands means that our grip isn’t very strong. And when our hands are dried out, it hurts to apply pressure on our fingers to grasp something. (The dry hands also tend to slide off of slick surfaces like shiny metal doorknobs.) And when my hands are freshly creamed, slippery lotion also makes grasping things difficult.
I think what causes us problems is the combination of dry hands plus extra pressure. The way to compensate for the dry fingers that don’t have a good grip on some surfaces is to apply more pressure. But more pressure hurts my fingers when they’re dry and cracked. So it’s a bit of a negative reinforcement cycle.
Strangely enough, one of the household items that our boys have trouble dealing with is the plain old Cetaphil or Aquaphor jar. The jar’s wide rim means that a small, child-size hand has to be fully spread out in order to grab it. And the material of the lid means that it’s really hard to get enough traction to grab the side of the lid with the palm of your hand. (I can usually get the jars open by using a towel.)
Continue reading Megan vs. Doorknobs; Rachel vs. Glasses
By Rachel See, on May 29th, 2013 We have a lot of new blog projects in the works, but I wanted to take a few moments today to write about why I am excited to be attending the FIRST Regional Conference (Patient Support Forum) in Dallas, Texas on June 8. (It’s still not too late to register.)
Here’s what I think the FIRST regional conferences offer:
Continue reading Why I Am Attending the FIRST Regional Conference
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