WHAT I LEARNED AT THE CONFERENCE: part 7

Well, at least I think it's part 7; after a while it gets hard to remember!

Anyway, as I've already mentioned--another thing I learned about at the conference was:  Switchfoot.  They're a great musical group.  Their music is not overtly religious.  But it is spiritual.  And they try to say something in their songs.  One song of theirs I heard at the conference has lyrics that I think really speak to those of us with Moebius Syndrome; and really they speak to anyone who has physical differences.  It's from their song "Who We Are."  I'm just going to focus on a few lines.  Here we go:

"They said it's complicated"

And it is.  No doubt, having Moebius Syndrome complicates your life.  It can make some things harder and more difficult--in speaking, in swallowing, etc.

"They said we'd never make it this far
But we are"

But--exactly!  How often at the conferences have we heard that.  Parents of Moebius children come up to us.  And so many of them say--the doctors said we'd never meet anyone else with Moebius.  They said my child would never talk.  They said he or she wouldn't survive.  They said he or she wouldn't go to school.  But Moebius children do all of those things.

"They said the fight would break us
But the struggle helped to make
Who we are"

There are many who doubt us.  There are many who, upon first seeing us and meeting us, assume that we must have an intellectual disability.  Some look down upon us.  Some are prejudiced against us.

So sometimes we have to struggle.  But we overcome.  We achieve.  And maybe it's true--the struggle makes us better.  It makes us tougher.  No one is better at adapting to things than we are.

And now--now, our network has grown.  And we have each other too.  And so it's not just a situation where "I" have Moebius Syndrome.   Now there's a we.  There's an us.  And we all have things in common.  And that helps us too.

Thanks, Switchfoot, for putting these ideas into some simple, but powerful, words.

WHAT I LEARNED AT THE CONFERENCE: part 6

For the next couple of days, I'm going to talk about a couple of new and interesting (to me, at least) thoughts and sayings I learned about via the conference.  These thoughts said a lot to me.

First, there was Rick Guidotti, and all his work through Positive Exposure, the FRAMES project, and the Pearls Project.  Rick has a great saying:  Change how we see...and see how we change."

And of course a lot of what his talking about is the concept of "beauty."  I think most in society see beauty as skin deep.  They believe in the kind of beauty that Hollywood and television and fashion sells:  that beauty is about high cheekbones, smooth skin, full hair, a certain kind of lip, certain kinds of muscles, a certain kind of waistline, etc etc.  Few differences are allowed.  Nothing that is seen as un-"normal" can be tolerated.  So of course, if you have Moebius Syndrome, or Albinism (a condition which Rick first saw years ago and helped turn him to his new life) you are not seen as beautiful.  It's assumed that you have no beauty, that such can not be brought out in you, that people would not want to see you.

Rick Guidotti of course knows that such is not true.  And through his photos, and through his films, he shows that all those with physical and facial differences are in fact beautiful; that instead of turning away, you just have to see these folks as they really are and get to know them.  That all we have to do, in fact, to see their beauty is to "change how we see."

But he does not stop there.  And this kind of thinking does not stop there.  Because what we also get at here is that we find that, if we do change what we see, we won't believe the good things it will do...to us.  If we change how we see, then we see that all humans, even if they look different, have beauty; that we should accept all; that all have lives and deserve them; that we shouldn't turn away from anyone, even if they look different.  We will become more accepting.  We will become more tolerant, more open.  We will become better people.  So, if we change how we see...then just see how we change.  And become better.

Really, in trying to raise awareness, that's one of the things that we in the Moebius community have been trying to tell people.  Maybe we just haven't quite known how to say it before.  But this is an excellent way to in fact say it.  Hey, world--change how you see everyone with physical and facial differences.  And then--see how you change.  For the better.  Thanks, Rick.

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WHAT I LEARNED AT THE CONFERENCE: part 5

You know, another thing I think I learned at this year's conference is simply this:  I learned just how important these conferences really are.

What I mean is this:  the conference is such a good, powerful, emotional experience for those with Moebius.  Finally they can be around people like them.  They can talk to others who know exactly what we all go through every day.  You don't have to be afraid that someone is going to stare at you, or that another is going to wonder what's "wrong" with you.  At the conference, if you have Moebius, you are kind of the "normal" one, for a change!

And of course, there's even more than that.  The conference is about the families of those with Moebius too.  It's about their siblings, their parents, their grandparents.  And for them too, the conference is an amazing thing.  They get to talk with other moms and dads about their struggles, their achievements, and their joys of being Moebius parents and grandparents.  They get to share information.  They get to learn things.  They get to be around other people who, again, know exactly what they are going through.

Maybe I have been getting information from an unrepresentative sample, I don't know.  But based on the people I've talked to, and all the comments and posts I've been reading on Facebook, it seems like this conference had such  a great, positive effect on so many people.  I think we're all excited about that.

And it just makes me think:  we have just got to find a way to get more people to these conferences.  What I mean is:  we need to find more ways to help people find a way there.  Let's face it--attending the conference is not cheap.  Plane fares are expensive, and then there's the expenses of hotels, food, etc.  Most people aren't rich.  That's something we really have to think about and try to work on.  We want as many people as possible to be able to benefit from the conference.  In the meantime, we're so glad to many got a lot out of this one.

WHAT I LEARNED AT THE CONFERENCE: part 4

I also learned about Rick Guidotti.  He's an amazing story.  He used to be a very big fashion photographer.  But he's changed--and now he's out to help society kind of re-define how they see beauty.  I and my family met Rick, he and his crew filmed us, he did a brief photo-shoot of us, and he did the same for many others at the Moebius Syndrome Foundation conference, all to help with his latest project.  And he is such an unbelievable human being, so full of energy and compassion for everyone.  It was a joy to work with him.

But first, let's talk about the organization Rick has founded, and then I'll have more to say below; his organization is called Positive Exposure.  What's it all about? 

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Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti.  Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.

So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure.It has always been about beauty for Rick.  “In fashion I was always frustrated because I was told who I had to photograph.  I was always told who was beautiful.”   It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path?  How do you get people to see those with differences not as victims, but kids and people first and foremost?  The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.

The photos give people the permission to see beauty and interpret beauty in their own right.  Not to see beauty that is dictated by industry’s ideas of what is acceptable.  What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.

Our Mission:
Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism.  Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.

The statistics to support our work are staggering. With one out of five children  in the United States being born with a disability, the need for society to understand and respect children and adults living with genetic, physical and behavioral differences is critical.

Our programs:

• Photo shoots, interviews, and self-esteem workshops to empower people living with difference. (Image)
• Lectures and workshops targeting medical schools, corporations, nursing and genetic counseling programs, universities, elementary and secondary schools worldwide.
• The Pearls Project, an interactive, educational program for K-12 students, teachers, and healthcare providers.
• Image Database for print and media.
• Media Campaigns.
• Multi Media Exhibitions.

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Also, Rick is now involved further in something called the FRAMES project.  That was why he was photographing and filming so many of us at the conference.  His project will create a short video on Moebius Syndrome that will be available online, and will be especially aimed at audiences of medical professionals.  It will help explain Moebius Syndrome, and make people understand that it is about people; that we with it are not simply objects to be studied.

I know Rick will do a great job, and it's an honor for all of us to work with him.  If any of you ever have a chance to meet Rick and to work with him, do it.  You'll be glad you did.

WHAT I LEARNED AT THE CONFERENCE: part 3

I also attended a session that was just for adults with Moebius Syndrome.  It was called the "Just for Adults" meeting (we also had similar sessions that were Just for Moms (moms of children with Moebius), Just for Dads, and Just for Grandparents.  And in two years, we might just add a session that would be just for the siblings of children with Moebius.  These meetings are very popular and help people a lot.

In the Just for Adults session, which was led by my esteemed colleague Matthew Joffe, what we did was sit around in a big circle, and the session was opened up and anyone could bring up any topic they wanted to bring up, and all could say whatever they wanted to say.  I tried to listen very carefully to what everyone brought up, and so this is what I learned:

1] So much of having Moebius Syndrome as an adult is about adapting.  It's about adapting to your life, to your circumstances, to whatever life throws your way.  Of course, having Moebius means it is very difficult for us to show facial expression.  But we want to be able to do so.  We want to smile.  So some us seek the smile surgery; and while that isn't for everybody, if you do want it, we agreed that we'd encourage you to get it.  Some of us have a hard time, in our eyes, of creating tears.  We suffer from dry eyes.  But we heard how there are minor surgeries that you can get and products that you can use that can help you with that.  Moebius Syndrome affects people differently.  We don't all have dry eyes.  But no matter what, we are all adapting, and doing so very well, every day.

2] Some had never met anyone else with Moebius Syndrome before.  But now they had.  And it was an overwhelming, but outstanding experience, for all involved, we all agreed.  For many of us who are older, when we were in our teens and 20s, we thought we were the only ones.  We thought we were alone, that nobody else looked like us.  We all agree we're so fortunate enough to have these conferences and to able to connect with each other on social media.  We are not alone.

3] And finally, I think we all agreed that we can.  That is, that we can go out, we can accomplish things, that nothing need hold us back.  We are people who have jobs, and who have been successful at them; we are teachers, we are managers, we attend college, we are going to graduate school, we're successful photographers, we're doing it all.  And you can do it too.  You deserve a life.  You will have a life.

At the end of the conference, we had a slideshow of pictures taken there; and the last song playing along with the pics was Switchfoot's "Who We Are."  And you know--some of the lyrics from that song sums up us Moebius folks quite well.  Here's an excerpt of the lyrics from that song:

They said it's complicated
They said we'd never make it this far
But we are

They said the fight would break us
But the struggle helped to make
Who we are

Who we are
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
Who we are
(in the fever of our youth)
Who we are
(We've got nothing left to lose)
Who we are
(There's still time enough to choose)
Who we are
Who we are
Who we are

Who we are
(I wanted something with meaning)
Who we are
(Yeah I wanted something to believe in)
Who we are
(Yeah, sure as I'm here breathing)
Who we are
(I wanted more)
Who we are
(Yeah, I wanted more)
Who we are
(Yeah, I wanted more than just a feeling)
Who we are
Who we are
(Yeah, for more than just a season)
Who we are
Who we are
(Yeah, we become what we believe in)
Who we are

WHAT I LEARNED AT THE CONFERENCE: part 2

So what else did I learn at this year's Moebius Syndrome Foundation conference, held in North Bethesda, Maryland, just concluded?

Well, let me write a bit about what some people may think is a surprising topic:  service dogs.

I went to a conference session led by Natalie Abbott.  Natalie is an important member of our Moebius community.  She has Moebius Syndrome.  She is a member of our Moebius Syndrome Foundation board; and she helps coordinate and lead our activities on social media.  Natalie also has a service dog.  And so that was the topic of her conference session.  There were also 3 other people participating in the session, from a local organization that helps provide people who need them with service dogs.

Many people I suspect have the wrong idea about service dogs.  Not that they think there is anything wrong with them.  Most people love service dogs, and can't wait to pet them (even when perhaps they shouldn't; I sometimes am guilty of that!)  But I suspect many think service dogs are only for those who are pretty much completely blind and deaf.

They are not.  Service dogs can be for anyone--as long, that is, as you have a kind of disability in which you need a service dog to help you complete certain specific tasks.

So, for example:  if you have Moebius Syndrome, and you live with various physical pain and other physical limitations, a service dog can help you with certain things.  If you drop your keys, a service dog can pick them up for you.  If you go out to get the mail, your dog can get the mail for you and hold on to it until you get back into your apartment or house.  When you're walking down the street or wherever you happen to be, your service dog can help you maintain your balance.

And of course, in general, your service dog can help you integrate better in society and have better acceptance from others.  Because, even though perhaps you look different and sound different (if for example you have Moebius), if you have a service dog with you, people will be interested in your dog and be more willing to interact with you because of that.  They'll come up to you and want to talk to you about your dog.  They will want to pet him or her.  And thus they will meet you.

There are certain things to remember, though.  1] You cannot get a service dog ONLY for the purpose of getting other people to like you and talk to you.  As the joke went:  if you're a young man, you can't just get a working dog to help you meet women!  You must need the dog to perform certain specific tasks for you.  2] In addition, it is not an easy process to get a service dog.  You have to apply.  There will be several different interview processes.  You have to be trained.  You have to qualify for a dog.  The process of acquiring a service dog usually takes at least a year.

But the bottom line is:  if you have Moebius Syndrome, or other kinds of differences or disabilities, you may very well qualify to get a service dog.  You may want to look into it.  So this was a very interesting session, and I learned a lot from it.  Oh, and by the way--Cassius, who is Natalie's service dog, is very, very smart and very handsome.  It was great to meet him!

WHAT I LEARNED AT THE CONFERENCE: part 1

So as most of you probably know, I haven't blogged for the past few days because I was at our bi-annual Moebius Syndrome Foundation Conference 2014, this time held in North Bethesda, Maryland.  It was a wonderful, moving experience--as always.  I met some new, terrific people--as always.  And I re-connected with great people who I am proud to say are my friends, and there is nothing so terrific as that.

And as always, I learned a great deal.  So let me in the next few days write and muse about just what I learned.  First of all:  we had an excellent opening keynote speaker, on the conference's first day.  His name was James Partridge, and he leads an organization from the UK called Changing Faces.  Here's some more about him, which I found here:

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is the Founder and Chief Executive of Changing Faces.

When he was 18 James Partridge was severely burned in a car fire that changed his face, and his life, forever.

After a period of recovery in intensive care, James spent a gruelling ‘gap year’ in hospital having reconstructive surgery for the 40% burns to his face and body, before going up to Oxford as planned.  Every vacation and the whole of his third year were then sacrificed to the surgeon’s knife, before he graduated in politics, philosophy and economics in 1975.  He embarked on a Masters in Demography at the London School of Hygiene and Tropical Medicine, which led on to academic appointments in health economics at St Thomas’ Hospital and at Guy’s Hospital, London.

In 1979, he exchanged academia for farming and a teaching post in A’ level economics, in Guernsey, where his wife, Caroline, was born and brought up.

James was determined that the unique insights gained during his prolonged recovery should be put to positive use, so early mornings in the milking parlour were interspersed with periods of writing, culminating in the publication by Penguin of his book Changing Faces, the Challenge of Facial Disfigurement in 1990.

The warm response to this led him to relinquish life as a dairy farmer to found Changing Faces in 1992 to pass on the lessons learned, and to work for the rights and inclusion of people with facial and body disfigurements.

The charity has, from the outset, been underpinned and informed by academic evidence and research.  It partnered the University of the West of England, Bristol, in setting up the first Centre for Appearance Research in 1998, which is now a fully-fledged research centre with 28 attached academics. The University recognised James’ contribution to academic research by granting him an Honorary Doctorate of Science in 1999.

As well as directing Changing Faces, James has served on many committees and panels bringing disability, human rights, user, consumer and lay perspectives to bear on a range of subjects.  He is also a founding partner of Dining with a Difference, which aims to challenge and change the way chief executives and directors of private and public organisations address disability as a strategic business issue.  Over the years Dining has made a major impact on the thinking of organisations such as the Royal Mail, Barclays and Jobcentre Plus.

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So what does Changing Faces try to do?  Here's an excerpt, found here:

Welcome to Changing Faces. We’re a charity for people and families who are living with conditions, marks or scars that affect their appearance.
Our work is divided into two areas:
Changing Lives
We aim to help individuals lead full, confident and satisfying lives. We give practical and emotional support to adults, children and their families. We also provide training, support and advice to professionals in health and education.

Changing Minds
We aim to transform public attitudes towards people with an unusual appearance. Our goal is 'face equality' and we promote  fair treatment and equal opportunities for all, irrespective of how they look. We campaign for social change: lobbying for integrated health services; influencing schools and workplaces to create more inclusive environments; and pushing for anti-discrimination protection and enforcement.

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And something that really interests me is Changing Faces' "Face Equality" campaign.  Here's more: 

Changing Faces launched the Face Equality on Film campaign in 2012 calling for balanced portrayals of people with disfigurements in films.
More than a million cinema goers were invited to challenge their assumptions about a character in a short film called ‘Leo’ starring actress, Michelle Dockery, and Leo Gormley, a man with burn scars. The film was shown in 750 Odeon cinemas nationwide.

A YouGov survey commissioned by the charity found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil or villainous character in a film. Ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.
James Partridge, CEO of Changing Faces, said: “We’re so used to seeing people with disfigurements portrayed as the villain in films that it may be hard for people to imagine they could ever play someone’s friend, the Dad picking up his kids from school, the US President, or a lover.
“It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed.
“The problem is that, for those who actually do have facial scars or whose faces are asymmetrical as a result of cancer, strokes or birth conditions, the way that people react in the cinema can spill over into the way they are treated in everyday life. It can encourage people to make moral judgements based on what they see on the screen.
“Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life. Changing Faces hopes the film and campaign will encourage audiences and the wider film industry to think about how disfigurement can be portrayed in a more balanced way.”

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And here is a link to their short film called "Leo."

These are all things we need to think about.  Check out Changing Faces' website.  It is very valuable.

HEALTH UPDATE: THE IMPORTANCE OF THE PLACENTA

I thought this might interest many of you.  You know, one of the questions of course about Moebius Syndrome is:  why is it that some babies are born with it?  And one of the theories that has been advanced to answer that question is:  perhaps something happens to the unborn child during pregnancy that helps cause it.  And maybe soon we'll find other, more complete explanations.  But clearly pregnancy is important.  Many medical professionals argue, then, that the placenta is very important in pregnancy; and yet it is something that, they say, we do not know enough about.  Let's find out more:

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SAN FRANCISCO — Minutes after a baby girl was born on a recent morning at UCSF Medical Center here, her placenta — a pulpy blob of an organ that is usually thrown away — was packed up and carried off like treasure through a maze of corridors to the laboratory of Susan Fisher, a professor of obstetrics, gynecology and reproductive sciences.

There, scientists set upon the tissue with scalpels, forceps and an array of chemicals to extract its weirdly powerful cells, which storm the uterus like an invading army and commandeer a woman’s body for nine months to keep her fetus alive. The placenta is the life support system for the fetus. A disk of tissue attached to the uterine lining on one side and to the umbilical cord on the other, it grows from the embryo’s cells, not the mother’s. It is sometimes called the afterbirth: It comes out after the baby is born, usually weighing about a pound, or a sixth of the baby’s weight.

It provides oxygen, nourishment and waste disposal, doing the job of the lungs, liver, kidneys and other organs until the fetal ones kick in. If something goes wrong with the placenta, devastating problems can result, including miscarriage, stillbirth, prematurity, low birth weight and pre-eclampsia, a condition that drives up the mother’s blood pressure and can kill her and the fetus. A placenta much smaller or larger than average is often a sign of trouble. Increasingly, researchers think placental disorders can permanently alter the health of mother and child.

Given its vital role, shockingly little is known about the placenta. Only recently, for instance, did scientists start to suspect that the placenta may not be sterile, as once thought, but may have a microbiome of its own — a population of micro-organisms — that may help shape the immune system of the fetus and affect its health much later in life.

Dr. Fisher and other researchers have studied the placenta for decades, but she said: “Compared to what we should know, we know almost nothing. It’s a place where I think we could make real medical breakthroughs that I think would be of enormous importance to women and children and families.”

The National Institute of Child Health and Human Development calls the placenta “the least understood human organ and arguably one of the more important, not only for the health of a woman and her fetus during pregnancy but also for the lifelong health of both.”

In May, the institute gathered about 70 scientists at its first conference devoted to the placenta, in hopes of starting a Human Placenta Project, with the ultimate goal of finding ways to detect abnormalities in the organ earlier, and treat or prevent them. 

Seen shortly after a birth, the placenta is bloody and formidable looking. Fathers in the delivery room sometimes faint at the sight of it, doctors say. It is bluish or dark red, eight or nine inches across and about an inch thick in the middle. The side that faced the fetus is covered by a network of branching blood vessels, the umbilical cord emerging like a fat stalk. The side that faced the mother, glommed onto the uterine wall, looks raw and meaty.

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In some cultures, the organ has spiritual meaning and must be buried or dealt with according to rituals. In recent years in the United States, some women have become captivated by the idea of eating it — cooking it, blending it into smoothies, or having it dried and packed into capsules. Not much is known about whether this is a good idea.

When scientists describe the human placenta, one unsettling word comes up repeatedly: “invasive.” The organ begins forming in the lining of the uterus as soon as a fertilized egg lands there, embedding itself deeply in the mother’s tissue and tapping into her arteries so aggressively that researchers liken it to cancer. In most other mammals, the placental attachment is much more superficial.

“A parasite upon the mother” is how the placenta is described in the book “Life’s Vital Link,” by Y. W. Loke, a reproductive immunologist. He goes on: “It has literally burrowed into the substance of her womb and is siphoning off nutrients from her blood to provide for the embryo.”

An Invader’s Intricacy

The placenta establishes a blood supply at 10 to 12 weeks of pregnancy. Ultimately, it invades 80 to 100 uterine vessels called spiral arteries and grows 32 miles of capillaries. The placental cells form minute fingerlike projections called villi, which contain fetal capillaries and come in contact with maternal blood, to pick up oxygen and nutrients and get rid of wastes.

Spread out, the tissue formed to exchange oxygen and nutrients would cover 120 to 150 square feet. Every minute, about 20 percent of the mother’s blood supply flows through the placenta. The front line of the invasion is a cell called a trophoblast, from the outer layer of the embryo. Early in pregnancy, these cells multiply explosively and stream out like a column of soldiers.

“The trophoblast cells are so invasive from the get-go,” Dr. Fisher said. “They just blast through the uterine lining to get themselves buried in there.”

They shove other cells out of the way and destroy them with digestive enzymes or secrete substances that induce the cells to kill themselves. Michael McMaster, a professor of cell and tissue biology at the University of California, San Francisco, said that failures of this early process probably happened fairly often. People often assume that miscarriages and other problems arise from the fetus itself, but he said, “it’s probably true that at this early stage, a lot of trophoblast malfunction can underlie pregnancy loss or future disease.”

Trophoblasts are so invasive that they will form a placenta almost anywhere, even if they land on tissue other than the uterus. Occasionally, pregnancies begin outside the uterus, in fallopian tubes or elsewhere in the abdomen, and the rapid, penetrating growth of the placenta can rupture organs. Placentas that form over a scar on the uterus, where the lining is thin or absent — say, from a previous cesarean section — can invade so deeply that they cannot be safely removed at birth, and the only way to prevent the mother from bleeding to death is to take out the uterus.

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Trophoblasts are a major focus of the research by Dr. Fisher’s team, and her laboratory also acts as a bank, providing cell and tissue samples to other researchers around the country. One staff member is a recruiter, charged with the delicate task of asking women in labor to donate their placentas for research.

Dr. Fisher’s lab discovered that as trophoblasts invade, they alter certain proteins on their surfaces, called adhesion molecules, to become more motile. Researchers later found that cancer cells do the same thing as they spread from a tumor to invade other parts of the body.

Trophoblasts change in other ways, mimicking cells of the blood vessels they invade. The spiral arteries, which feed the lining of the uterus, become paved with trophoblasts instead of the woman’s own cells. This “remodeling” process dilates the arteries considerably to pour blood into the placenta and nourish the villi.

“When I first read this anatomy, I couldn’t believe the whole world wasn’t studying this,” Dr. Fisher said.

Examining a micrograph of a remodeled artery, she said: “Look at the diameter of this vessel. It looks like some monster thing from the deep chasms of the sea.”

What Can Go Wrong

Invasion and remodeling are essential: If they do not occur, the placenta cannot acquire enough of a blood supply to develop normally, and the results can be disastrous. One consequence can be pre-eclampsia, which affects 2 percent to 5 percent of pregnant women in the United States. Rates are higher in poor countries, particularly those in Africa. The condition brings high blood pressure and other abnormalities in the mother, and can be fatal.

Pre-eclampsia is considered a placental disease: Most women with the illness have abnormally small placentas, and when pathologists examine them after the delivery, they often find blood clots, discolorations and a poorly developed blood supply.

How and why the problem occurs is not entirely understood. For unknown reasons, the placenta does not form properly and cannot keep up with the demands of the growing fetus. The trophoblasts cannot fully change into artery cells and begin churning out an abnormal array of molecules that jack up the mother’s blood pressure and may damage her blood vessels.

The rising blood pressure may be an attempt to compensate by forcing more circulation to the placenta. But it backfires. The only treatment is to deliver the baby, which probably works because it also removes the placenta.

At some hospitals, pathologists who specialize in the placenta examine the ones from troubled pregnancies or sickly newborns, looking for clues to what went wrong. Massachusetts General Hospital also keeps seemingly normal placentas in a refrigerator for about two weeks, until it is clear that the mother and the baby are healthy.

Dr. Drucilla J. Roberts, a placental pathologist there, said that relatively few hospitals had placental pathologists or the ability to train them. Nationwide, there are fewer than 100, she estimates. More are needed, she said. She and a colleague, Dr. Rosemary H. Tambouret, often examine specimens sent from other hospitals not equipped to do the work themselves.

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“The placenta gives the answer in many term stillbirths,” Dr. Roberts said. Half of those deaths are never explained, but many of them involve abnormalities in the placenta, including infections or unusual conditions in which the mother’s immune system appears to have rejected the placenta.

“I can’t tell you how important it is to the family just to have an answer,” she said. Knowing can help ease the guilt that many parents feel when a child is stillborn. The information can also tell doctors what to watch for in future pregnancies.

In one case, Dr. Roberts said, examining the placenta helped diagnose an immune incompatibility between the parents that had caused multiple stillbirths and miscarriages. The mother was treated and went on to have a healthy child.

Another placental pathologist, Dr. Rebecca Baergen, the chief of perinatal and obstetric pathology at NewYork-Presbyterian Hospital, said that in some cases, particularly those involving fetal death or stillbirth, more could be learned from the placenta than from the fetus. She described a case in which a newborn was extremely small, had stunted limbs and did not survive. Doctors suspected a growth disorder, but bone samples revealed nothing.

The placenta was sent to Dr. Baergen. She found many problems with its blood supply and recommended a battery of tests for the mother. The tests found a hereditary blood disorder. The mother was treated and later gave birth to a healthy baby.

“The placenta has essentially been called the chronicle of intrauterine life,” she said. “It really tells the story of what’s been going on. It plays the role of many organs — liver, kidney, respiratory, endocrine. It can give you a lot of information about the baby’s and the mom’s health.”

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MOEBIUS SYNDROME IN THE NEWS

Some of you may have seen this already.  But just in case--meet another young Moebius hero, Juliete Lyng, from Moultrie, Georgia.  Read more about and how others are trying to help:

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A Helen, Ga., girl with lots of Moultrie ties is struggling with three serious illnesses and needs a bone marrow transplant.

Juliete Lyng, who celebrates her 11th birthday Wednesday, was born with Pierre Robin syndrome and Moebius syndrome, her family said.

Pierre Robin syndrome is a birth defect in which the infant has a smaller-than-normal lower jaw, a tongue that falls back in the throat, and difficulty breathing, according to an article on the National Institutes of Health website. Moebius syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement, according to another article on the same site.

As if those issues weren’t challenging enough, in April Juliette was diagnosed with myelodysplastic syndrome, or MDS. In MDS, a person’s stem cells in the bone marrow do not mature into healthy blood cells, according to another NIH article.

MDS puts Juliette at a 97 percent chance of developing leukemia, her family said.

Juliette is the daughter of Marti and Brian Jaenke and Ryan Lyng, all of Helen, but her great-grandmother, Mervin Richter, lives in Moultrie, and so do a number of her aunts, uncles and other family members.

On Saturday, Moultrie Church of God, 3113 Veterans Parkway South, will hold an event, Jumpin’ for Juliette, to raise money for the family. A flyer from the church promises jump houses, slides, sand art activity, Snowbiz shaved ice snocones, hotdogs and drinks, a bake sale, a yard sale and much more. The event starts at 11 a.m. and is scheduled to go until 6 p.m.

The family has established a fundraising page at www.giveforward.com. The page has a goal of $6,000 and as of Monday had received two donations totaling only $55.

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BULLYING UPDATE

The Washington Post recently ran an excellent advice column by Marguerite Kelly; the question asked of her had to do with a mother's 11 year old son who was, unfortunately, being bullied.  Some of you Moebius moms and dads have undoubtedly had the experience of knowing your child was being bullied; what to do?  Some interesting ideas here.  Read on:

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Question: We have always tried to get our 11-year-old son involved in sports, activities, clubs and camps, but he has been picked on about his weight and his intelligence his whole life, and middle school made last year the worst year of all.

I had been so proud of the way my son would shake off the bullying and try to make friends, have fun and fit in. The longer he was in this school, however, the more he was bullied and the more depressed he got until he finally hit a tipping point and couldn’t cope with it anymore. After that he would come home, cry for a while and then lock himself in his room, play video games and eat junk food nonstop! When I would ask him what was wrong, however, he either wouldn’t tell me or he would be ashamed of the names these kids had called him.

I don’t know how to help my son, which breaks my heart and makes me feel powerless. Even the people at his school said that they couldn’t do much, and I’m afraid that a psychiatrist would simply give my son some pills for his depression.

What can I do? What should I do?

Answer: First of all, your son should know that a bully picks on children who are weaker than he is (or fatter or taller or shorter or whose skin is a different color or who go to a mosque instead of a church or a temple); he picks on anyone who cries or gets mad when he is attacked, and he feels better about himself when he makes someone else feel bad.

The more you stress a bully’s problems, the more self-confident your son should feel, but he doesn’t need more advice. Instead, he needs you to ask him what he’s going to do about this bullying problem. He’ll tell you that there is nothing he can do about the bullies in his life, but if you keep quiet and give him time, he’ll come up with a few ideas. Consider them carefully, and then propose some well-researched ideas of your own.

Question: We have always tried to get our 11-year-old son involved in sports, activities, clubs and camps, but he has been picked on about his weight and his intelligence his whole life, and middle school made last year the worst year of all.

I had been so proud of the way my son would shake off the bullying and try to make friends, have fun and fit in. The longer he was in this school, however, the more he was bullied and the more depressed he got until he finally hit a tipping point and couldn’t cope with it anymore. After that he would come home, cry for a while and then lock himself in his room, play video games and eat junk food nonstop! When I would ask him what was wrong, however, he either wouldn’t tell me or he would be ashamed of the names these kids had called him.

I don’t know how to help my son, which breaks my heart and makes me feel powerless. Even the people at his school said that they couldn’t do much, and I’m afraid that a psychiatrist would simply give my son some pills for his depression.

What can I do? What should I do?

Answer: First of all, your son should know that a bully picks on children who are weaker than he is (or fatter or taller or shorter or whose skin is a different color or who go to a mosque instead of a church or a temple); he picks on anyone who cries or gets mad when he is attacked, and he feels better about himself when he makes someone else feel bad.

To help you get through this rough passage, read “Words Wound: Delete Cyberbullying and Make Kindness Go Viral” by Justin Patchin and Sameer Hinduja (Free Spirit; $13.67); “Don’t Pick on Me: Help for Kids to Stand Up and Deal With Bullies” by Susan Green (Instant Help; $11.69); and “The Essential Guide to Bullying: Prevention and Intervention” by Cindy Miller and Cynthia Lowen (Alpha; $11.15).

The more you stress a bully’s problems, the more self-confident your son should feel, but he doesn’t need more advice. Instead, he needs you to ask him what he’s going to do about this bullying problem. He’ll tell you that there is nothing he can do about the bullies in his life, but if you keep quiet and give him time, he’ll come up with a few ideas. Consider them carefully, and then propose some well-researched ideas of your own.

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I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT

And not only did I think this was interesting, but I also know that many of my Moebius friends love their coffee.  Well, guess what--coffee and a good, healthy workout might just kinda go hand in hand.  Read on:

Half of Americans start their day with coffee, and according to recent study, working out after downing a cup of java may offer a weight-loss advantage.

The Spanish study, published in the International Journal of Sport Nutrition and Exercise Metabolism, found that trained athletes who took in caffeine pre-exercise burned about 15% more calories for three hours post-exercise, compared to those who ingested a placebo.

The dose that triggered the effect was 4.5 mg of caffeine per kilogram of body weight. For 150-pound woman, that's roughly 300 mg of caffeine, the amount in about 12 ounces of brewed coffee, a quantity you may already be sipping each morning.

If you've always thought of coffee as a vice -- one you're simply not willing to give up -- you'll be happy to know that it's actually a secret superfood. And if you exercise, caffeine can offer even more functional benefits for your workouts.

Here are five more reasons to enjoy it as part of an active lifestyle, along with five "rules" for getting your fix healthfully.

Improved circulation

Recent Japanese research studied the effects of coffee on circulation in people who were not regular coffee drinkers. Each participant drank a 5-ounce cup of either regular or decaffeinated coffee. Afterward, scientists gauged finger blood flow, a measure of how well the body's smaller blood vessels work.

Those who downed "regular" (caffeinated) coffee experienced a 30% increase in blood flow over a 75-minute period, compared to those who drank the "unleaded" (decaf) version. Better circulation, better workout -- your muscles need oxygen!

Less pain

Scientists at the University of Illinois found that consuming the caffeine equivalent of two to three cups of coffee one hour before a 30-minute bout of high-intensity exercise reduced perceived muscle pain. The conclusion: caffeine may help you push just a little bit harder during strength-training workouts, resulting in better improvements in muscle strength and/or endurance.

Better memory

A study published this year from Johns Hopkins University found that caffeine enhances memory up to 24 hours after it's consumed. Researchers gave people who did not regularly consume caffeine either a placebo, or 200 mg of caffeine five minutes after studying a series of images. The next day, both groups were asked to remember the images, and the caffeinated group scored significantly better.

This brain boost may be a real boon during workouts, especially when they entail needing to recall specific exercises or routines.

Muscle preservation

In an animal study, sports scientists at Coventry University found that caffeine helped offset the loss of muscle strength that occurs with aging. The protective effects were seen in both the diaphragm, the primary muscle used for breathing, as well as skeletal muscle. The results indicate that in moderation, caffeine may help preserve overall fitness and reduce the risk of age-related injuries.

More muscle fuel

A recent study published in the Journal of Applied Physiology found that a little caffeine post-exercise may also be beneficial, particularly for endurance athletes who perform day after day.

The research found that compared to consuming carbohydrates alone, a caffeine/carb combo resulted in a 66% increase in muscle glycogen four hours after intense, glycogen-depleting exercise. Glycogen, the form of carbohydrate that gets stockpiled in muscle, serves as a vital energy "piggy bank" during exercise, to power strength moves, and fuel endurance.

Packing a greater reserve means that the very next time you work out, you've upped your ability to exercise harder and/or longer.

But this news doesn't mean you should down as much coffee as possible -- your good intentions may backfire. In my work with athletes, I recommend five basic rules to best reap caffeine's rewards:

Don't overdo it. The maximum amount of caffeine recommended for enhancing performance with minimal side effects is up to 6 mg per kg body weight, which is about 400 mg per day (or about 16 ounces of coffee) for a 150-pound woman.

Incorporate it in healthy ways. Doctor up coffee with almond milk and cinnamon instead of cream and sugar, or whip coffee or tea into a fruit smoothie, along with other nutrient-rich ingredients like almond butter and oats or quinoa.

Be consistent with your intake. Research shows that when your caffeine intake is steady, your body adjusts, which counters dehydration, even though caffeine is a natural diuretic. In other words, don't reach for two cups one day and four the next.

Keep drinking good old H2O, your main beverage of choice.

Nix caffeine at least six hours before bed to prevent sleep interference, and listen to your body. If you're relying on caffeine as an energy booster because you're tired, get to the root of what's causing fatigue. Perhaps it's too little sleep, overexercising, or an inadequate diet. If something's off kilter, you won't see progress, and you'll likely get weaker rather than stronger. Striving for balance is always key!

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THE FAULT IN OUR STARS--AND US (part 4)

A couple more things:

1] Later in the novel, Hazel and Augustus are getting on a plane, to take a trip to Europe.  But they get to go on the plane first, ahead of most others.  And of course, as they go through the gate, everyone stares at them.  Their cancer, Hazel noted, "separates us from other people.  We were irreconcilably other..."

People see you always as "different."  As not "normal."  Some of us with Moebius know that feeling.

2] So often during the book--when their suffering from cancer is really acute; when peoples' actions towards them are the most annoying; when life seems to be at its most unfair--both Hazel and Augustus will say this:

"The world is not a wish-granting factory."

And...well.  No, it's not.  It's really not that for anybody.  I don't know how much comfort that is.  Maybe it's rather cold comfort.  But it does help keep things in perspective.

3] But remember this too--THE FAULT IN OUR STARS is partly a love story.  It's about people, their lives, their loves, their dreams, and sometimes their heartbreaks.  As Hazel's mother says to her--"you deserve to have a life."  And she does.

And so do we with Moebius Syndrome.  We all have lives too.  We accomplish a lot of things.  For those of you Moebius moms and dads who worry about your child with Moebius--what kind of life will he or she have?  Will she really have a life?  I say, don't worry.  Your child will surprise and amaze you every day.  I've seen it over and over again.

Because those with Moebius Syndrome are pretty amazing...

AWARENESS UPDATE

Good for both the people who called attention to this, and to the company who made the change:

A major health insurer has agreed to stop using the term “mental retardation” after a family complained when the phrase was used to describe their daughter’s condition.
Kraig and Jennipher Beahn were stunned when they received a letter from Cigna a few weeks back that included a reference to “mental retardation.” The correspondence was related to their 10-month-old daughter, Kennedi, who has Down syndrome.
“We had never heard the ‘r’ word spoken from any of our friends, acquaintances or medical professionals,” Kraig Beahn told WCTV.
The Tallahassee, Fla. parents sprung into action, writing and emailing the insurance provider to ask that the company use “intellectual disability” instead.
“When we initially received Cigna’s letter with such language, oriented towards our child … our hearts simply stopped beating,” the couple wrote.
Within days, Cigna not only apologized to the family, but committed to modify the terminology it uses companywide.
“We’re doing this because it’s the right thing to do,” Cigna spokesman Mark Slitt said in an email to Disability Scoop. “The term ‘mental retardation’ is outdated and it’s also hurtful.”
Slitt said Cigna has already begun the process of revising its health plan documentation but indicated that the company will need to take some legal and regulatory steps in order to use the updated documents.
“This will take some time, but we’re committed to making the changes,” Slitt said.

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THE FAULT IN OUR STARS--AND US (part 3)

I hope you all had a great 4th of July.  Now that the holiday is over, we can pick up where we left off.  What else can we find in this book?

1] At one point Hazel is having a bad day.  She calls her boyfriend Augustus and one of the things she says is this--that she's having a bad day partly because "...I don't want this particular life..."

In other words, she doesn't want to have cancer; she doesn't want to have to suffer the physical pain of that; she doesn't want to be the Cancer Kid; and so forth.

Do you ever feel that way?  Do you ever wish that you did not have Moebius Syndrome; that you don't want to have that "particular life"; that you don't want to have to deal with the problems and difficulties it brings?

I think many of us deal with Moebius very well, with a lot of courage and toughness; and because of that we don't dwell on topics like this very much.  This is in fact our life and so we have to deal with it, and we do.  However, I think that, if sometimes you do feel the way Hazel expressed her feeling above--it's okay.

2] Later: Isaac, Hazel and Augustus' friend, who also has cancer, had to have surgery to remove his last good eye.  It was the only way to stop his cancer from spreading.  So now he is blind.  Hazel decides to go visit him.  And in doing so, she thinks this:  "I felt bad for him.  Even though I hated the sympathy people felt toward me, I couldn't help but feel it toward him."

Have you ever felt that way?  I think I have.  Life is full of strange, contradictory feelings...

THE FAULT IN OUR STARS--AND US (part 3)

What else can we learn from John Green's remarkable book?  What else might connect with us?  Here are two more examples:

1] At one point in the book, Hazel--again, the book's main character and narrator, a teenager who has cancer--sees a saying; an "Encouragement"; framed on a wall.  It said:  "Without pain, how could we know joy?"  But Hazel is not so sure it is true.  She thinks:  "This is an old argument in the field of Thinking About Suffering, and its stupidity and lack of sophistication could be plumbed for centuries, but suffice it to say that the existence of broccoli does not in any way affect the taste of chocolate."

When it comes to Moebius Syndrome, that passage connects with us in my view this way:  some would say then that, well, in some ways having Moebius Syndrome can be a benefit.  We come to understand that looks aren't everything.  That beauty truly is not skin-deep.  The friends we have are real friends who we know don't simply like us for surface things.   And so forth.

On the other hand, some with Moebius might say:  yeah, but the difficulties and the pain Moebius Syndrome causes simply aren't worth that.  That is something each of us must decide for him or herself.

2] There's another character in the book--Isaac.  He's another teen who has cancer.  In the story, he has a girlfriend named Mona.  They'd been a couple for a long time.  She apparently had never suggested that his cancer bothered her.  They'd pledged to love each other always.

But just as he was about to have important, major surgery--surgery that would leave him blind--Mona broke up with Isaac.  She told him that, regarding his surgery, his condition, his blindness, she "couldn't handle it."

Hazel:  "I was thinking about the word 'handle', and all the unholdable things that get handled."

Right on.  We of course don't know the answer to this question; but for those of us with Moebius Syndrome--how often do you think it happens that other, "normal" people don't want to be around us, don't want to have relationships with us, and they justify it to themselves by thinking--"I can't handle that"???

Maybe more often than we know.  And yet--how do you handle dying of cancer?  How do you handle having a child who is dying of cancer?  More often than we think, saying you "can't handle it" is kind of a flimsy excuse, isn't it?

"The Fault In Our Stars" sure makes you think.

THE FAULT IN OUR STARS--AND US (part two)

So let's pick up where we left off yesterday.  What can the book "The Fault in our Stars", by John Green, teach us?  Or, another way to look at it is--what can it teach us?  Let me just focus on a few quotes:

1] Hazel, the main character of the book and its narrator, who is 15 and has cancer, reports that at her support group, most talk about "fighting" their cancer, in one way or another.  At times she gets tired of this.  But at other times she admits--that is some of way those with cancer do.

And sometimes that is what we with Moebius have to do.  No, it is not exactly the same.  Most of us are not fighting for our lives against a dangerous, metastasizing disease.

But still, we fight.  It can be hard when your eyes don't work just like most others' do.  It can be hard when your speech is different.  It can be difficult when other people maybe are slow to accept you.  But we do the best we can--to make ourselves understood, to be successful, to make lives for ourselves, despite the obstacles we face.

2] At one point, Hazel doesn't really want to go to her support group.  But her mom convinces her to do so; and when she drops Hazel off, her mother calls out the window "Make friends!"

Two things struck me about this.  First--this is really relevant to many of us in the Moebius community. Isn't it?  How many of you Moebius moms and dads, who have kids with Moebius who are 8 years old, or 10, or 12, or are teenagers--how many of you want to, every day, urge your kids to make friends?  Probably many of you do.  Being shy is one of the hardest things Moebius children have to deal with.  Making friends can be hard.

Okay but, now...second thing:  Moebius moms and dads--DON'T SAY THIS.  Or anything like it.  Don't tell your kids this!  Yes, I mean, of course--you want your kids to have friends.  And yes, of course, you want to do what you can to encourage them to do so.  But just telling them--"make friends!"--as if there's nothing to it, as if it's easy, as if all one needs is to be reminded to make friends, and then it will happen--just isn't helpful.  Many of us with Moebius know we need to make friends.  We know we need to get out there, and not be hermits.  But it isn't easy.  Don't suggest anything else.

3] Later:  Hazel is frustrated about something, and so she lists several things that bother her.  And one of the things she says is that she wished she did not have "lungs that suck at being lungs."  (Her cancer was mainly in her lungs and affected them.)

In other words, she's kind of saying--ugh, she wished she didn't have cancer.  Now this doesn't fit in with the image that we sometimes want to create of those who are suffering.  We imagine them as people who are strong, courageous, who never complain and deal with everything perfectly.  But of course, that's not true.  People with cancer get frustrated, tired, angry, fearful, etc.  And that is perfectly okay.

And you know what?  It's perfectly okay for those with Moebius to let out their frustrations sometimes, too.  It can be hard to have Moebius.  At times it's no fun.  And we all know why that is.  There's nothing wrong with acknowledging that.  With letting it out sometimes.  As long as you don't allow it to keep you from having a life.

John Green wrote a great book.  More lessons to come!

"THE FAULT IN OUR STARS"...AND US

Today I want to write my own musings about something--and that is the book "The Fault in Our Stars", by John Green.  It's a powerful book.  I've read it twice now.  It has a lot to say, to all of us.  It is very profound.  And it's a book that has something to say to those of us in the Moebius Syndrome community.

Now, of course, this is not a book about Moebius Syndrome.  Instead it's primarily a book about two young people with cancer.   So I of course do not mean to say at all, in drawing connections here, that Moebius is exactly akin to cancer.  Cancer can be directly, and far too quickly, life-threatening.  Moebius need not be; many of us with it live very long lives.

But still, one thing John Green's book does is make a point:  that people with cancer often are seen as "diferent."  They're the other.  They're stared at.  They are (sometimes unintentionally) ostracized.  People don't want to be around them.  After all, it's no fun to be around people who are sick, who may die (and soon).  In other words, if you have cancer, you have a difference.  And often it is a physical one, very easily seen.

People with Moebius Syndrome can easily relate.  We too are seen as "different."  We too often have physical differences, easily seen--our eyes might not be straight; we might have club feet; our speech is affected; and of course we often cannot show facial expression.

And thus, like people with cancer, we make some uncomfortable.  Some people don't want to be around people who look different (maybe it reminds those who are seen, by society, as "good-looking" that such was not and is not guaranteed).  They don't want to be around people who are not seen as "normal."  We too then get stared at.  We get put down.  It's assumed there are a lot of things we can't do.  In "The Fault In Our Stars", Hazel and Gus don't want to be seen merely as "Cancer Kids."  Nor do most of us want to be seen only as The Person Who Has Moebius, or The Person Who is Weird/Different/Fill-in-the-blank.

But just as John Green's book shows us that persons with cancer are not simply persons with cancer--they can and do have lives and loves way beyond that--the same is true for us with Moebius.  Hazel's mother at one point in the book tells her that "you deserve a life"--one not spent simply at home, waiting to die.  And the same is true for us.

In the days to come, we'll explore this book and what it means for us further.  In the meantime--if you haven't read the book yet, do so!  You'll be glad you did.