January 21, 2010
by marfmom
18 Comments

My Monkey Baby

For today’s Mama Kat’s Writers’ Workshop, I’m writing on my strangest dream ever (prompt #2).

I am so glad that I thought to type out my first pregnancy dream the day after I had it. I had forgotten how crazy it was until I re-read it last night. I was about 2 months pregnant at the time and preparing for my 5 year high school reunion. So here goes:

It was late at night and I was standing in a parking lot, outside of a small car. I had just given birth in that car, at the same time as another Latina woman. She’d had quadruplet boys and I’d had a girl. I entered the car to bring my daughter home, but the other woman tried to tell me the baby was hers. She had even named the girl Attila.

So, this baby girl was huge…like at least 10 lbs huge. The weird thing? I’d given birth at 4 months. All I could think was “darn, I never even got to show!”

Somehow I get my daughter from this other woman and her quadruplets, and my baby and I are just walking around. She is the PERFECT baby. She was very smiley and quiet. However, she was totally naked, just having been birthed and all, and we had no clothes for her. Mark bought her some bright yellow diapers.

Then, I decided to take Attila to my high school reunion. As I was showing her to various classmates, I noticed she was growing more and more hair.

She turned into a Pygmy Marmoset!!! An evil one! One who jumped out of my arms and bit my classmates on the head!

from www.aqua.org/animals_ pygmymarmoset.html

And I was like “CRAP! What am I going to do with a Marmoset baby?!?! Is her tail going to shrink? Will her fangs go away?”

My mother told me “that’s what happens to premature babies,” and that I couldn’t breastfeed anymore or she’d bite me.

What was YOUR strangest dream?

January 20, 2010
by marfmom
12 Comments

An Open Letter to Medical Professionals

An Open Letter to Medical Professionals:

The physician/patient relationship is a complicated one. I realize this. And in the United States, there aren’t a lot of rules for decorum. So, because I like you (or at least some of you), I’m going to give you a few pointers today of things you probably shouldn’t say to patients.

For starters, you should never tell a patient of the opposite sex that s/he has a nice figure. That’s just icky. Then we start wondering how you’re imagining said figure. Along those lines, you shouldn’t be so bold as to say something like “WOW! You look so, SO much better when you’re straight!” to a person with scoliosis. I promise: the patient will begin to doubt your years of education. I’m pretty sure that most young children could identify the better-looking option. If that’s all your 8+ years at fancy schools taught you, we’re in trouble.

Never utter the phrase “Oh, I know just how you feel.” The one exception to this? If you are the patient’s long-lost identical twin, because we’ve all heard those Discovery Channel shows about the separated-at-birth-twins who led basically identical lives. In fact, if you are my long-lost twin, I’m liable to forgive your misguided attempt at empathy anyway.

And while there’s something to be said for a medical professional who gets excited by her job, as a patient it’s a little disconcerting to hear, “Yah, all of us were just in the back looking at your x-rays. We’ve never seen anything like it!” Sorry, it just doesn’t inspire confidence.

That said, patients usually don’t mind if you’re honest and tell us when you don’t know the answer. We’d rather you be up front then pretend to be an All Knowing Medical God, ‘cause we can totally see through that routine, even though we didn’t go to 8+ years of school for that.

Moral of the story? Use some common sense. And if you’re short on that, just give me a ring and I’ll tell you what to say. My rates are reasonable, I promise!

Best,
Maya, the Marfan Mom

January 19, 2010
by marfmom
1 Comment

Support Ehlers-Danlos Syndrome Research!

Today I write on behalf of my friends with Ehlers-Danlos syndrome, a disorder related to Marfan syndrome. There are multiple types of EDS (affecting 1.3 million people worldwide) and NONE have real treatments available to them, let alone cures. One of the most serious of these, vascular-EDS, is particularly close to my heart.

At the end of my freshman year of college, during a routine exam, my geneticist said he was SURE I had vascular-EDS. He was reluctant to give me any details about the illness until I threatened to go home and Google it myself.

He was hesitant because vascular-EDS is a death sentence. With vascular-EDS, aneurysms develop anywhere in the body and organs can spontaneously rupture. There is no way to predict when this will happen, nothing to do to prevent it. The average life-expectancy is in the mid 40s. Children have died from just doing a cannonball into the pool.

However, hope is on the horizon, and that’s where YOU come in. The Ehlers-Danlos Syndrome Network has been named a finalist in Chase bank’s Community Giving Challenge. They are up for a $1,000,000 prize. What would this money do for the foundation? Well, Dr. Hal Dietz has designed a “mouse model” of Marfan syndrome (basically, mice with Marfan). Our mice have dramatically increased doctors’ knowledge of Marfan syndrome, such that we now have an average life expectancy. The prize money would allow Dr. Dietz not only to create a mouse model of vascular-EDS, but to do other EDS research as well.

Go here to vote for the EDSN!!! Then, tell all your friends!

[youtube=http://www.youtube.com/watch?v=pmrF8Uh-Hyk&feature=player_embedded]

Below, please read what Dr. Dietz has to say:
“Vascular Ehlers-Danlos syndrome (or vascular EDS) is a disorder of the body’s connective tissue – the material between the cells that give the tissues form and strength. In vascular EDS the body lacks sufficient type III collagen, a molecule that contributes to the strength of the skin, intestines, uterus, and most importantly, the blood vessels. People with vascular EDS live with the knowledge that they will die from this condition at an age ranging from childhood to young adulthood. They are also told that there are no effective treatments. There are no medications that are known to strengthen the tissues or delay blood vessel rupture. Attempts at surgical repair are often delayed there is confidence that the patient will die within hours if nothing is tried. This is because the tissues are so weak that they often simply fall apart during surgery – akin to trying to sew together wet tissue paper. Of all the conditions that I care for, I hate this one the most. It not only drastically shortens the length of life, but also robs people of any meaningful sense of hope and quality of life – always anticipating that the shoe will drop at any moment. Indeed, all too often children with vascular EDS lose any sense of ambition and purpose despite truly remarkable talents and potential. To their mind, “Why bother.”

Fortunately, there is now strong reason for hope…It is now our goal and intention to make mouse models of vascular EDS in order to learn more about the condition and to test this and other therapies. If someone had suggested 5 years ago that a pill might be able to treat a connective tissue disorder, I would have considered them crazy. Given recent breakthroughs and sufficient resources for further research, I will be shocked if a revolutionary new treatment for vascular EDS is not in general use within 5 years. I have already begun to share this sense of optimism with children with vascular EDS. Our job is to bring this goal to fruition. Their job is to begin dreaming big.”

Harry (Hal) Dietz, MD
Johns Hopkins University School of Medicine
Institute of Genetic Medicine

THANK YOU! Together, we can make a difference.