June 30th, 2008 by Dr. Val Jones in News
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I read a touching story at the BBC news center about a young woman with Alpert’s Syndrome. This rare syndrome is present in only 1 in 170,000 births. It results in facial disfigurement and mitten-like hands.
The physical defects of Apert’s syndrome were first described by Fredrick Apert in 1942. These characteristics include: A tower-shaped skull due to craniosynostosis (premature fusion of the sutures of the skull)—an underdeveloped mid-face leading to recessed cheekbones and prominent eyes, malocclusion (Faulty contact between the upper and lower teeth when the jaw is closed) and limb abnormalities such as webbing of the middle digits of the hands and feet.
Bones of the fingers and toes are fused in Alpert’s infants giving a “mitten-like” appearance of their hands. Children with Apert’s syndrome can have unusual speech characteristics such as hyponasal resonance due to an under-developed mid face, small nose and long soft palate and, sometimes, cleft palate.
What struck me about the girl’s story was how she described how it felt to be teased growing up, and how the worst part of the teasing was that no one stuck up for her. I’ve seen kids do this kind of thing before, and I can imagine how painful it is when no one has the courage to go to bat for you. I’ve often wondered how “doing nothing” to defend a little one might be just as bad as actively harrassing them. I’d encourage parents to teach their children not to tease others, and beyond that, to come to the defense of those being teased. I bet this will do a lot of psychological good for the victims.
The good news in this case is that the girl has had some very successful reconstructive surgery and has a fairly normal life. The teen is even thinking about boyfriends, and preparing for college. Many thanks to the surgeons who did such a wonderful job.
And coincidentally, the Happy Hospitalist brought this story to my attention: a 4 month old kitten was in a horrible accident that resulted in her losing the front half of her face. Veterinarians were able to save her life, though she remains quite deformed. I am told that the kitty is not in any pain, and is enjoying her life as a therapy pet. She brings hope to those recovering in the hospital from surgeries and serious illnesses. I suppose they see her as a loving animal who is cheerfully going about her kitty business, without giving much thought to her previous injury.
These stories of hope are made possible by the surgeons and veterinarians who devote their lives to saving face. In so doing, they provide the rest of us with valuable lessons, and new friends of exemplary courage.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 20th, 2008 by Dr. Val Jones in Medblogger Shout Outs
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Blogging is a social hobby that has brought me many new friends. I suppose one could say that blogging is a modern form of “pen pals” – only more public, and with faster responses. The medical blogosphere (comprised of people who blog primarily about health topics) is small but growing rapidly. Those who have been blogging for 3 years or more have achieved a kind of patriarchal/matriarchal status within our peer group, and they can be depended upon to serve up interesting facts, commentary, and true life stories on a nearly daily basis.
Although I read about 70 medical blogs regularly, I have met only 2 of these bloggers in person. I met Ramona Bates, physicist, plastic surgery blogger, and quilter extraordinaire in Little Rock, Arkansas last year and even observed one of her surgeries in the O.R. She took me to a fried catfish bar with her hubby and I met her affable chocolate lab, Rusty – a sizeable dog who doesn’t take direction from strangers.
I have been a big fan of Dr. Rob Lamberts’ Musings of a Distractible Mind. Of all the blogs I read, his is probably the least predictable. Interspersed between insightful commentary of health IT and helpful clinical pearls, one will find diatribes about accordians, dancing-goat exposés, and warnings about mutant cucumbers. For those who arrive at his blog looking for health content, yet unaware of Dr. Rob’s tendencies, I can imagine that certain posts might leave them with a quizzical feeling.
So I wasn’t terribly surprised when Dr. Rob arrived at Revolution Health late one Friday afternoon carrying a small grocery bag containing a plastic lobster. My astute colleagues realized at once that this was the sign of a man who needed a beer – and he was immediately offered one at our in-office happy hour. I waited a few minutes for the beverage to take effect before I inquired as to the purpose of the lobster.
Dr. Rob has named his lobster “Zippy,” and plans to have him sent around to various medical bloggers to be photographed in interesting places. He has created a website for these photos, and has a strategy for raising money for brain cancer associated with Zippy’s travels. I was honored to be one of Zippy’s first stops on the blog trail and will need to find some interesting photo settings for him in DC.
Currently dear Zippy is sitting on my desk top, confirming to colleagues that I must indeed be a woman of rather ecclectic decorative office tastes. I certainly hope that Zippy will develop a cult following for his good cause.
The rest of my time with Dr. Rob was most enjoyable – I had no idea that he was a Rochesterian (i.e. from Rochester, New York) as I have a secret fondness for people from that part of the world (hey, I married one!) We had dinner at a local Inn and Dr. Rob and my hubby gleefully discussed health IT interoperability initiatives. I listened with interest, and toasted to a couple of guys trying to make healthcare better for Americans – lobsters and all.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 30th, 2008 by Dr. Val Jones in Health Tips
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May is skin cancer awareness month, and Revolution Health has created an awareness campaign to help people become more educated about their risks. In a unanimous vote, I was selected as the blogger/spokesperson for skin cancer awareness – probably because I’m “the fairest in the land.” Well, the truth is I’m so white I’m actually closer to light blue – couple that with a high freckle count and green eyes and you’ve got one very high risk lady.
So I’ve decided to see a dermatologist once a year for a full skin check. I must admit that the first year I went I was convinced that I’d be biopsied into oblivion. The only way to be sure that a mole is not cancerous is to take a sample and check it under the microscope. So any doctor with a conservative eye would need to do a lot of “rule out melanoma” testing, right? Wrong. I was happily wrong. Dermatologists are trained to recognize individual freckle and mole patterns, and don’t do a biopsy unless they see an “ugly duckling” mole – one that stands out from all the others. I was so excited to escape the office with my skin in tact that I vowed to be obedient and return for a yearly check up.
If you are fair skinned and/or have had a significant amount of sun exposure in your life, or if people in your family have had skin cancer, you should definitely check in with a dermatologist to make sure you don’t have any suspicious moles. The doctor will tell you how frequently you should have follow up exams.
Here are some things you can do right now:
Find out if you’re at risk for skin cancer and learn what you can do to prevent it.
See what skin cancer looks like.
Check out my recent interview with Dr. Stephen Stone, past president of the American Academy of Dermatology, about skin cancer and about tanning salons.
Coming soon: the true story of my blogger friend who had a basal cell carcinoma removed from the side of her nose. She required plastic surgery to fill the gap, but it looks great now!This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
March 24th, 2008 by Dr. Val Jones in Medblogger Shout Outs
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I was really impressed with some beautiful work done by a French plastic surgeon on behalf of this patient with Von Recklinghausen’s disease (Elephant man’s syndrome). Thanks to Dr. Bates for pointing it out. A full face transplant was performed with incredible improvement in the man’s appearance and quality of life. I discussed the ethics behind face transplantations in a previous post.
I also applaud the plastic surgeon who carefully filled the nose defect of my fellow blogger TBTAM who had a large basal cell carcinoma removed from the side of her face. See the post-op photo and recent healing shot here. I myself have had some facial surgery, after being mauled by a dog as a child.
I am so grateful to the surgeons who do this kind of work. I know they get a bad rap with all the Dr. 90210 publicity and breast/botox focus. But there are also many unsung heroes. This post is for you! Many thanks from those whom you’ve helped over the years.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 22nd, 2007 by Dr. Val Jones in True Stories
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Dr. Sid Schwab recently wrote a wonderful blog post about what doctors feel when they treat patients who remind them of their own kids. For example, he describes how it makes the physician want to run home and hug his/her kids out of gratitude that they’re ok. His post reminded me of an experience I had in the pediatric Emergency Department where I came face to face with memories of my own childhood trauma.
I was bitten in the face by a neighbor’s dog when I was about 4 years old. It was unprovoked and completely unexpected. The dog had no history of viciousness and I had no history of tormenting the creature. I was standing in the hallway, eye to eye with the dog (we were the same height) and I reached out to gently pet him when he attacked me. My parents freaked out, blood was pouring out of my face, and apparently it initially looked as if he’d gotten my left eyes since it was covered in blood. I was rushed to the local hospital where a family physician cleaned me up and put stitches in my cheek, eyebrow, and corner of my eye. It was hard to sit still for the numbing medicine and I was crying softly through it all. I don’t remember the details of the event, but I do still have the scars on my face – scars, I am told, that would be less noticeable if a plastic surgeon had closed the wounds.
Flash forward 30 years and I’m working a night shift in the pediatric ED. A father carries in his young daughter, crying and bloody. She had been mauled by a dog – and had sustained injuries to her face only. I escort the little girl to an examining room and begin flushing her wounds with saline to get a sense of how extensive they are. Dad goes to fill out paperwork while mom holds the girl’s hand.
It was eerie – her injuries were very similar to my own. I figured she’d need a total of 15 stitches or so, all on the left side of her face. There was no missing flesh so I knew that the cosmetic result would be good. I explained to her mom that we would be able to stitch her up nicely – and that she’d likely have minimal scarring. The mom asked for a plastic surgeon – and I agreed to call one for her right away.
That night I had a new appreciation for what my parents must have felt when I was bitten. I could see these strangers’ concern – how they hoped that their little girl wouldn’t be permanently disfigured, how they wanted the most experienced doctor to do the suturing, how they held her hand as she cried. It was really tough – but we were all grateful that the injuries weren’t more severe… and I was glad that I didn’t have to do the suturing. I showed the girl my scars and she seemed comforted by how they had turned out. This experience reminded me how personal experience can add a special dimension to caring for others, and that sometimes having been a patient can make you a better doctor.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
