Welcome to May! This month is dedicated to raising awareness about ichthyosis. This looks to be one of the most active Ichthyosis Awareness Months ever! Here are the goings-on around town we’re aware of:
FIRST, the Foundation for Ichthyosis and Related Skin Types, is publishing member stories throughout the month of May. The first “personal insight into the lives of individuals and families touched by ichthyosis” is from Cynthia Bremmer, who writes about living with lamellar ichthyosis. (Several of the international groups have also started talking about this series!) Expect a new entry every Monday-Wednesday-Friday for the entire month! And we know that FIRST also has a bunch of fundraising and advocacy events scheduled for this month. (Hopefully we’ll see our friends getting some time in front of the TV cameras on Friday morning — stay tuned!)
Our friend Carly Findlay is also hosting an extensive series of guest posts on her blog, amplifying voices and faces through blogging. We, of course, are big believers in the power and reach of blogging, and we were happy to contribute to her series there. Carly also made an “It Gets Better” video, talking about ichthyosis and appearance.
Brenna’s mom, Courtney, has also posted an amazing video featuring children with ichthyosis for Ichthyosis Awareness Month. Courtney’s blog post about the video (and supporting FIRST) is a must-read.
Evan’s mom, De De, also blogged about the start of IAM. And Stephanie has a lot going on in her life (she’s started having contractions) but she also mentioned IAM on her blog.
We’re excited to see all of the activity for Ichthyosis Awareness Month. Let us know if we’ve missed anything!
A year ago, I was asked to bring my children to a medical meeting to participate in grand rounds. It was…unfulfilling, shall we say?
Fast forward to January. In the course of starting this blog, we have met quite a few new families, and while I feel that I am pretty confident in answering general questions, sometimes I need to draw on medical resources to help families find the support that they need. Rachel and I are not medical professionals, nor do we try to fill that role. So anyway, a situation arose where I had to contact Dr. Sherri Bale, the co-founder and head of GeneDX in Gaithersburg, Maryland. Within the ichthyosis community, GeneDX is known for conducting genetic tests for a large variety of rare disorders, including the entire spectrum of the ichthyoses and epidermolysis bullosae. Dr. Bale and her Chief Medical Officer, Dr. Gabriele Richard, are very active in ichthyosis research and with FIRST, the Foundation for Ichthyosis and Related Skin Types.
I emailed Dr. Bale, got the answers I needed, and got back to the overseas family who had sought me out. Dr. Bale and I ended up messaging back and forth for a bit, just generally catching up. She soon realized that we had moved to the East Coast corridor since we had last seen her. Once she realized how close we were, she invited us out to the office to do a presentation for the staff. Close, in this case, means a 3 hour drive each way.
Sure, I said. That would be great! We scheduled the presentation for an early February afternoon, and we were off!
Continue reading Invited to Speak: The Storyteller
Let’s talk about wonder cures. We see them every day on Facebook and in well-meaning email forwards from our relatives and every time we seek out advice from Dr. Google.
Science has a pretty bad reputation in this country. Sometimes medical care is a matter of blindly trusting a doctor’s advice. And we know all-too-well that sometimes, doctors make mistakes, or that some medicine is later discovered to be unsafe. When coping with something rare, like ichthyosis, a lot of times even the doctors are still just guessing.
Medicine used to be almost all guesswork mixed in with religion and mysticism. But things began to change at the end of the 19th century. Becoming a doctor meant more rigorous study and passing licensing tests, and folk healers began to drop away. And a lot of the guesswork was eliminated as the doctors and scientists collectively tested things and learned more about the way things worked. Even so, snake-oil salesmen in traveling medicine shows and mystery cure-alls from the druggist remained popular, especially for immigrants and working class families. And despite over a century of medical discoveries and real understanding of how physiology and genetics and germs play a role in our lives, the old-time fraudsters still abound.
Continue reading The Trouble With Science
Reading online today, we came across the story of Penny Loker, a lady with a birth defect, a malformed face condition called hemifacial microsomia, or in English, half-underdeveloped small face. Like families dealing with ichthyosis, her birth defect is obvious to a typical stranger in the store, and accordingly has led to stares, questions, bullying and other issues.
CNN published a photoessay article on children devastated by the effects of Agent Orange. Clicking into the article, the first slide came with a warning: “Warning: the following photographs contain graphic content of severely deformed children. Viewer discretion is advised.”
Ms. Loker was offended. She wrote to CNN and told them that this warning was essentially telling her, and any other deformed person, that they needed to warn everyone that they are leaving their house and the people you meet outside were worthy of a similar warning.
CNN changed the warning, but did not remove it.
Ms. Loker’s email went viral. We saw it today on Metafilter and also the Huffington Post. She has done an interview on television as well as been tagged in several other blogs.
Good for her. The message is out: People look different, and that’s okay.
EDIT: Picture #4 in the CNN photo series is NOT linked to Agent Orange. It’s a photo of a child with what looks like lamellar ichthyosis, which is a recessive disorder, although the caption claims that it is X-linked ichthyosis.
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 few of them seem a bit overwhelmed with the subject matter.
My lectures last for a little under three hours on Wednesday evenings. Three hours is a long time to keep a high level of energy, and I knew going in that I would need help keeping my throat from being parched. So for the first class, I went through three cans of Coke Zero during the lecture. And for the following classes, I drank directly out of a half-gallon jug of iced tea or lemonade — and by the end of the class, the entire half-gallon jug was empty.
Continue reading The Quirky Professor
The questions on our Reddit AMA today have pretty much stopped, which has given me some time to pull together some thoughts. First — a huge THANK YOU to Kyriaki. It was awesome doing this with you!
My own pictures of my skin (foot, neck, hand, knee) have been viewed over 150,000 times today. And our family photo (which we posted in the afternoon) has been viewed over 56,000 times. Kyriaki’s photos have been viewed even more times.
I’ve written about the power of social media connections before, but it’s never been this personal for me. Realizing that 150,000 people have seen an up-close picture of my (usually well-covered) body parts is both terrifying and awe-inspiring. It is hard to wrap my mind around the fact that we’ve connected with so many people, and that the words I hastily dashed off at 6:30 in the morning had that much of a reach. Fifteen minutes of fame, anyone?
Continue reading Thoughts on our Reddit AMA
Starting Monday morning, US time (7:00 AM EST – New York) and Monday night (9:00 PM ACST – central Australia), our friend Kyriaki will be joining us for an IAmA (I Am A ______, Ask Me Anything) on Reddit. We both have regular accounts there. She posts as CandlesandFish, and we post as ConfettiSkin, but for this AMA, we made a joint account called FishCandlesandConfetti. (We will post a direct link to the thread once we go “live”.) (ETA – link on the bottom!)
For Reddit: Here’s Kyriaki’s proof that she’s with us. (Cross reference to the pictures in her post that made /r/bestof three months ago, too.) (And this blog post and our blog and bio here hopefully is enough for Jennifer and Rachel.)
For our readers: If you are unfamiliar with Reddit, it is one of the biggest sites on the Internet — it has 43 million monthly active users. Pictures of babies with harlequin ichthyosis pop up frequently, often in forums on Reddit like /r/WTF — we’ve blogged about that before — often without a lot of context. The “Ask Me Anything” section has 3 million readers. which hosts open question and answer sessions for anyone interested, including President Obama and Adam Savage, actors and musicians, insiders at various companies, or random people on the street that have something unique to their lives such as “IAmA concert pianist. AMA!”
We h ave no idea what we’ll face from the Redditors. Hopefully we can figure out that whole duck-sized horse thing. Join us on Reddit on Sunday/Monday and see how we fare. We will, of course, write about the highlights (and lowlights) here.
Editing to add: We are now LIVE on Reddit!
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, but adults judged me (and my parents) for the way I looked, assuming it as my (or their) fault. From their perspective and assumption it was – dry, flaking skin that peeled off in scales and sheets was a symptom of only one thing, which was having been badly sunburned. And to be honest, it would have been hard to the untrained eye to tell my skin apart from that of a child recovering from a bad sunburn, except that my skin was already covered in fine wrinkles from a very early age…and that it looked like this no matter what I did, or how much I stayed out of the sun.
Continue reading Life with Ichthyosis: Judging By Appearances