Marfan Blog

Posted 7:10 PM
I'm awake. Still very groggy. I slept for an hour and a half, then was woken up by the phone (it didn't occur to me to turn the ringer off), stayed up for a couple hours, then crashed on the floor while reading. Woke up about three hours later. Since my husband was on midnight shift, and this was his last night, he did the same. We crashed around the same time, then woke up only by my alarm waking me up to remind me to take my calcium channel blockers.

I see a few mistakes and problems on the blog, and will fix them after I eat dinner? breakfast? lunch? whatever! I'm hungry! Again, thanks everyone for a fun time! Can't wait til next year. We'll have more time to plan and get things ready. There were some graphics I had to reformat so they would work on the web, and they didn't come out so good. But they're all great to see even if they're not perfect!
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Posted 9:11 AM

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Posted 9:00 AM
I did it! I made it through! Thanks to all the sponsors and all the people who sent me stuff to blog! Thanks to the friends who dropped comments and e-mails while I was sitting here alone.

I am hoping that it may have done some good. Besides raising money for the NMF, I am hoping this one-day effort will have helped raise awareness of the Marfan syndrome. I hope some people stopping by the blog during these past 24 hours, or who will stop by in the future (since the Blog will be up for years to come -- these messages will be archived, but still accessible) may have noticed a similarity in symptoms in themselves or in people they know. Since doctors often fail to recognize that there is anything seriously wrong, and diagnoses aren't easily made, I just hope people start to understand the severity of the Marfan syndrome.

I did this in memory Jane Harris, John Morrell III, Chris Paulsen, John Malara, Jocelyn Wilson, Anna Doherty, Glenda Knightstep, Scott Kiefer, Judy Hayes-Kuchyt, Saundra Hesse, Sara Cayo, Melody, Allison Dunvegan Reed, Roberta and Susan, and I know I'm missing a few because my brain's not working very well at this hour (but e-mail me if you have someone you want me to add. Include a .jpg picture, too, if you have one). And I did this in the hopes the children like Zoie will be able to live a long, healthy, pain-free full life.

Zoie, age 2
Thanks, everyone! Time to sleep!!
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Posted 8:31 AM
Didn't know Bryan had more Marfan haiku, did you?

i can't lift my wife.
because of this, my heart cries
it knows i blame it

please sit in the chair
drop... blink, blink... cover this eye
how many letters?

mitral valve prolapse
blood gushes through, dribbles back
where's the oxygen?

seen across the room
you look like someone i should tell
it might save your life

eyes, heart, lungs, spine, hips,
but not soul, thank god, thank god
connective tissue

(Marfan BASIC)
10 let me be young
20 warn me of the risk
30 time to pay

if only i were
fatter, shorter, uglier
ready for Oprah?

in the beginning
the tissue stretched and returned
now it misbehaves

©Bryan Jones

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Posted 8:01 AM
Haley is just so beautiful! I couldn't resist blogging another picture of her, this time with her brother Adam. Haley is 3 and Adam is 5.

Click picture to see larger version
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Posted 7:30 AM

Get your heart-filled HeARTworks 2004 Calendar today!
from the NationalMarfanFoundation.
They make nice gifts! (Christmas is coming!)

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Posted 7:12 AM
CNN.com - Germany's legendary dog-eating catfish dies - Jul. 25, 2003

(A ToddLink is a non-Marfan-related post that I posted between half-hours during the Blogathon just for grins.)
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Posted 7:00 AM
Here's another member of the Marfan community
(Bob, not the dog)
You already saw Bob's thumb in an early entry

Click on the picture to see a larger version

Visit Bob's home page
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Posted 6:33 AM
See, Cela? You thought I wouldn't make it! Still going "strong" (sort of) at 6:32 a.m.!
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Posted 6:30 AM
Still more great Marfan haiku from Bryan

cut my ribs in half
heal my heart, repair my lungs
can you prevent more?

beta blockers? Hell!
studies, trials, i don't care
hmmm, now, where was i?

given a topic,
my thoughts and fingers can fly
and my heart escape

shopping for a ride
i want a car with legroom
this leaves three choices

into life i jump
headfirst, heartfirst, charging on
to live while i can

HMO health plans
"the world's best medicine," if
you aren't pre-damaged

©Bryan Jones
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Posted 6:00 AM
From Jenny in Sweden
Long live the Internet! If there was no Internet, the only person with the
Marfan syndrome I would ever have met, is my mother. And I would not even know how many marfs we are out there worldwide. But since there is something called the Internet I have contact with many people all around the world
with the same problems, speculations and questions as I have. I am not alone! And I can search for more information about this syndrome in various databases, online journals, chat groups and so forth. Thanks to the marfan-list I can ask almost 500 people about their experiences in different matters. And that is A LOT more than I would ever be able to do without the Internet...

/Jenny in Sweden

Some of the online journals, chat groups and so forth:
Newsgroup: alt.support.marfan
Newsgroup: alt.support.tall
Long Tall Folks' Journal on LiveJournal
Yahoo! Groups Marfans Support and Chat
Yahoo! Groups Marfans Support Group
Christians With Marfans
Hypermobility Forum
Australian Marfans Syndrome Support List (Oz Marfans) Open to all, not just Australians
Marfan Association UK Forum
Mailing List van Marfan.nl in Dutch
Marfan Francophone a Yahoo! group in French
Yahoo Groups Marfan Syndrome in Singapore
and of course Marfan-List

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Posted 5:31 AM
International Federation of Marfan Syndrome Organization includes Marfan organizations in these countries:

Argentina
Australia
Belgium
Canada
Cuba
Denmark
Finland
France
Germany
Greece
Holland
Italy
Japan
Mexico
New Zealand
Norway
Poland
Singapore
Slovakia
South Africa
Spain
Sweden
Switzerland
United Kingdom
United States
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Posted 5:16 AM
CNN.com - Purple polar bear draws crowds - Jul. 24, 2003 " Paint the polar bear purple and the crowds will come." Poor polar bear! The indignity of it all!

(Hey! I can blog in my sleep!)

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Posted 5:01 AM
From Jenny in Sweden

Below is a link to the English version of the Swedish Marfan Association website. There is a very interesting list of articles and other literature about the Marfan syndrome. Most articles are in English and are from various medical journals.
Swedish Marfan Association

Thanks, Jenny! Great website!
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Posted 4:30 AM
From Ruth

God's gift
A son so sweet
Pleasant baby
Loveable and mine,
Child of grace.

Husband now & father, too.
Family man, loyal and true.
There first of all
Before a need is voiced,
Helping all, a job well done.

Many blessings came with this
Son # 3.
And, Thanks to God from me.

©Ruth / Ohio
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Posted 4:00 AM

Cheryll Gasner and Ellen England
(both friends have Marfan)

Thanks, Ellen!
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Posted 3:32 AM
I've been searching Google News everyday for stories about Marfan. Today's (I mean yesterday's!) news brought up an obituary for Genny Obert, automobile writer. She died from Marfan problems at 44. She was an auto enthuiast. Check out her Autodiva.com website. There's a picture there of her.
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Posted 3:00 AM
In her book, Own Your Health, (see entry below), Roanne Weisman includes an essay by her son, Ben Weisman. In his essay about having the Marfan syndrome, he writes:

"Theater has also helped me accept and understand that it's important to get help when you need it. So I feel okay that yoga, the Alexander lessons the craniosacral work help me feel better in my body. Doing these things has helped me feel freer to use my body onstage, to actually become, physically as well as emotionally, the characters I play.

"I have had a lot more life experiences than most of the teenagers I know. Because of my problems with my body, I will never use drugs, smoke or drink too much and my friends respect that. But I still like rock music, stupid movies, girls, yelling at Red Sox games until I can't even talk and hanging out with my friends. I finally realize that despite everything I've had to deal with because of my body and my genes, there's nothing about me that makes me less deserving of respect than anyone else."

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Posted 2:31 AM
Roanne Weisman recently had her book, Own Your Health : Choosing the Best from Alternative & Conventional Medicine published. Roanne has the Marfan syndrome, as does her son, Ben. After surgery to replace a mitral valve, a surgery somewhat common to those with the Marfan syndrome, Roanne had a devestating stroke. Rather than rely solely on conventional medicine or solely on complimentary medicine to restore her health, she discovered what worked best for her, and then wrote about it so others may benefit.

Roanne writes in the Introduction, "Growing up with chronic health problems spurred me to venture outside of the world of conventional medicine in search of ways to overcome them. My search led to alternative practices and eventually set me on the path toward integrative medicine. During both college and graduate school, I had already begun to dip a toe into the world of alternative medicine, beginning with a yoga class, which I found helped with strength, balance and posture, while putting no undue stress on my floppy joints. I also found the deep, meditative breathing to be relaxing and it just helped me feel better about my body."

In the foreword to Roanne's book, Dr. Brian Berman writes, "...Ultimately, this book is a celebration of the desire of people to re-humanize medicine, to reclaim a role in their own healing, and to be educated about and have access to choices in treatment."

Thanks, Roanne, for writing a great book and sharing what you've learned with everyone!
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Posted 2:00 AM
A poem by Georgia

We heard his cries made silently
His soul cried out longing to be free

Free from pain free from harm
Free to be in his fathers arms

He drew a breath then silence reigned
God reached down released him from his pain

Though we may hurt and shed our tears
We need to remember to have no fear

For he is happy he is free
He is with god and always shall be

Though from this earthly life he's parted
His eternal lifes just started.

©Georgia

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Posted 1:31 AM
Famous people thought to have the Marfan syndrome

Abraham Lincoln

Vincent Schiavelli, actor (Ghost, Man on the Moon, People vs Larry Flynt and many, many more), honorary co-chair of the National Marfan Foundation

Jonathan Larson, Tony Award-winning playwright (Rent)

Flo Hyman, captain, U.S. Olympic Volleyball team, 1984 (won gold medal)

Chris Patton, college basketball player (University of Maryland)

Akhanatan, father of King Tut

Charles de Gaulle, Rachmaninoff, Paganini, Mary Queen of Scots

Thanks, Eileen!

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Posted 1:00 AM
From Anne

Our daughter, Catherine, was born with very long fingers and toes. The doctor's first comment regarded our owning a piano. Another doctor saw Catherine when she was a day old and ordered an echocardiogram for he suspected Marfan Syndrome. Before the echo, he told me what he knew of Marfans - at the time, I knew I had heard of it tho, all I had known was those that had this syndrome were tall - and that it was believed that Abraham Lincoln had it. The doctor's view at this time was VERY bleak. I was given an impression that Catherine would soon be in heart failure. The echocardiogram confirmed an enlarged aortic root, and mitral valve prolapse with regurgitation. Before we left the hospital, we were quite sure that Catherine had Marfan Syndrome. Appointments were made to see a geneticist and pediatric cardiologist with in 3 weeks.

When at home, we were ever watchful of Catherine. We would hover over her crib watching her breathe (thinking, "is her breathing shallow?", "too quick"....). We'd also watch for blue around her mouth and any other signs of heart failure that we were told to watch for. She seemed like our first child instead of our seventh.

After those first few months of watchfulness, we were able to relax and not be so fearful - we were able to take "one day at a time". We learned to appreciate the lives of each of our children more because of Catherine.

An aside - When in the hospital speaking with the doctor that suspected Marfans, he asked if I had heard of it - I responded with "Is that what Lincoln had?" After the doctor left, I thought some about Lincoln wondering if he had a "bad" heart. I then asked myself, "how did Lincoln die?" Being a bit shook up, I honestly couldn't think how he died - I continue with this thought, wondering if it was his heart.... I turned to a friend that was visiting at the time and asked her, "How did Abraham Lincoln die?" She looked at me and hesitated, then said, "I believe he was shot."

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Posted 12:31 AM
More Marfan haiku from Bryan Jones

the world is designed
for five-foot six-inch people
this bothers my back

do you have 14's?
double A or triple A?
black hightops, not white?

you should learn about
the person bottled behind
those thick bifocals

i will not wear shorts
spiders have meatier legs
bluejeans will hide me

©Bryan Jones
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Posted 12:11 AM
Cool! Ryan mentioned the Marfan Blog on the front page of the Blogathon web! Thanks!

There are quite a few others blogging for foundations for rare and not-so-rare disorders:
Wampum is blogging for the Cure Autism Now Foundation
My Little Aspie is blogging for the National Alliance for Autism Research (for their son who has Asperger's syndrome)
Wizbang is blogging for the Doug Flutie Jr. Foundation for Autism Research
Not Geniuses is blogging for Ascent, a School for Individuals with Autism
And that's just those blogging about Autism! Check out the others bloggers or ride the web ring and see who they're blogging for.
I do think this Blogathon is really great.
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Posted 12:00 AM
From Teri

Marfan syndrome has had a profound affect on me. To know that there was something wrong with the most important thing in my life was one of the most devastating things that ever happened to me. At a very young age 20, this marvelous miracle of birth happened. But something was definitely not what it should be. Nothing that I could put my finger on - but something was for sure up. For the next fourteen years it was a torturous battle to try and find out what was wrong with my child. Sitting in his hospital room hearing him scream at the top of his lungs “Mommy I need you” as they had him tied up in a papoose type apparatus, doing a bone marrow, missing the first time and having to do it the second time. He was three years old at the time. Fifteen hospitalizations and five surgeries he had already been through. BUT no one could tell me what was wrong.

When he was eighteen months old I was told that I needed to see a psychiatrist because I was trying to tell the pediatrician that his iris wiggled (a sign of dislocated lenses). Eventually someone finally listened. That started the long and arduous trek to discover what I already as a mother knew. Derek did indeed have Marfan syndrome. My first exposure to Marfan syndrome was to read that the life expectancy was twelve years. God, the light went out in my heart.

Along the way we have met many wonderful, beautiful Marf’s. These people are so special. One of those persons was Scott Kiefer.

Scott was 32 years young when I met him. Always full of life, energy, and fun! Even though he had been through so much, he still kept his sense of humor. The second hardest thing I have ever had to do was sit in the waiting room at the hospital for Scott’s third major surgery knowing in my heart that Scott would probably not make it out of the operating room.

My last words to Scott that morning before his surgery were “See you on the other side” meaning to me when he woke up. But when Scott repeated those words back to me I knew that, that was not his meaning.

Scott will be forever in our hearts. He will be that angel that taps us on the shoulder and reminds us to smile. Don’t be so serious. It’s just life.

The first time we learned about Scott and his family was in an article in the Des Moines Register about his surgery in 1989 and how he had prevailed and lived despite his aorta actually rupturing. That is also the time that his family found out that his dad, both his siblings and a niece and nephew also had Marfan Syndrome.

Scott helped us to accept Marfan Syndrome with his humor, his love, his optimism, his intensity and his ability to see things from a very different perspective. He taught us to have tolerance for life, to not be so damned judgmental, to laugh at life instead of frown and most of all love your family. They are the most important things on this earth. Smell the roses along the way. He shoed us it is OK to be scared and share that with others – to draw from their strength when ours is not so great; and there is nothing wrong with being different and actually should be the desired. Scott taught us to fight with every fiber of our being and not to give up. There is always hope even at the bleakest moment.

Scott we still miss you and love you very much.

Derek, my son, reminds me so much of Scott. There is about a generation between them in age but there is a tremendous amount of likeness in their personalities and the “Marf” physical traits. Both men’s talents were never appreciated until much later in their lives.

Marfan syndrome has made Derek and me much different persons than we might have been. For me, I became a lot more vocal and this allowed me to let Derek grow into his own person.

Marfan Syndrome has come along way in the years I have been associated but we still have such a long way to go so we do not continue to lose our Marfan community.

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Posted 11:30 PM
If I had a nickle
by Nancy L.

If I had a nickle for every time I heard these words.
Your fingers are so long. Do you play piano?
I would be able to afford to go to one of those special conferences specifically about Marfan syndrome. Why you ask? I am 48 yrs old, and have never in my life, shaken the hand of another marf. Can you imagine a disorder, disease, or whatever that makes you so rare, you might never look at someones eyes that are just like yours.

If I had a nickle for every time I heard these words.
May I bring in my collegue, because he/she has never seen a marfan in person?
Since being diagnosed at the age of 3, a doctors visit is rarely just one doctor. We are so special and rare, that any specialist that has a chance to get a look at you, or to touch you with the stetha scope while he listens to the "marfan click", will do just that.

If I had a nickle for every time I heard these words.
Why are you so tall, your mom and dad are only 5'8"?
I would donate every single penny of it towards research.
Although medicine has changed dramatically, there are still plenty of us suffering and unable to lead normal lives. That is the unfair part of being a marfan.

Thanks, Nancy!

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Posted 11:00 PM

Three Marfs on a couch
Thanks, N!
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Posted 11:00 PM
Items matching Captain caveman on eBay. Never heard of him! Todd's a Youth Services Librarian. He knows his stuff. Here's more superhero stuff to buy on eBay Items matching Bizzaro Superman.
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Posted 10:30 PM
From Bob

Unlike most of us Marfs, I managed to complete a 21 year career in the millitary before finding out I had Marfan Syndrome. The first 4 years I was in we had annual testing on the five basic exercises. Then in 1970 they had a better idea called aerobics testing. We were to do any type exercise program we wished during the year but would be weighed and have to run a mile and a half within a time frame set by age. I like many of us Marfs could never run without falling on my face. Every year I was 20 pounds under my minimum weight ( but this was ignored as they were looking for the fat boys) When the time came to run the six laps on a quarter mile track I decided that I would just walk it. Taking my giant strides as fast as I could without falling over my own feet. On the fifth lap I was passing people who had been running the whole time and finished ahead of my allotted time, unlike many whom I had passed. Long legs do come in handy some times.

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Posted 10:00 PM
I Stand in the Ruins
from Clinical Trials, by Julie Kurnitz

I stand in the ruins and sing
In love with life, I'm free
I look at what I've lost
At what cost
At what became of me

It seems I lost and found myself, my voice
Let go of lots of stuff I had collected
The things I didn't choose gave me a choice
And none of this has been what I expected
Each new day and new year lets me rejoice
Rejoice in being human and connected

I stand in the ruins and sing
In love with life, and free
There will be more to lose
Or find or choose
We'll see what we shall see

©Julie Kurnitz

Used with permission. From The Marfan Writers Anthology, , which can be purchased from the NationalMarfanFoundation.
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Posted 9:30 PM
More good things about having Marfan
11. You are always the first person to know when it starts to rain, sleet,
snow, or hail (ouch!).

12. People always have to look up to you. :)

13. You will never have to invest in a ladder.

14. Any seat is a good seat at the movies/theater.

In my case I can reach into very small places in German car engines. I can't even begin to tell you how many times I used to have to go out to the garage to help my Dad with something on our Porsche when I was living at home.
Luckily I never made a career out of that!
Thanks, Aubrey!

15. You get really good scores at scrabble because of all the medical words you know
Thanks, Sally!

16. On hot summer days, you can leave your windows open a bit, and lock the doors... When you get back, you can reach in, and unlock the doors easily, secure in the knowledge that no-one else can fit their arm through that
opening, and then be able to reach the door latch :)

17. You can play octives easily on a keyboard, 'cause it's not that much of a stretch with your spider-fingers!

18. (for those kids out there!) It's harder for people to play 'keep away' with stuff from you! You can just reach over their shoulder, and take it out of their hand. (Note: This happened to me once with my dad... I was the same height as him at the time, we were playing around, and he wouldn't give me my book back. So I reached over his shoulder, and took it out of his hand (which he was holding out as far from him as he could! He hasn't tried that again!)

19. It's *way* easier to fold sheets/blankets when your armspan is as long as the sheet...

Thanks, Elaine!

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Posted 9:01 PM
Ryan
With the Marfan syndrome, one's armspan often exceeds one's height.

Thanks, Ryan!
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Posted 8:30 PM
From Ed

I have two intense memories of life with Marfan from my childhood. The first is when I was in third grade and Dr. Sponseller put me in back and leg braces. This now also meant that I was no longer allowed to play baseball or soccer. I was told by my physical therapist at first that I might only have to wear the back brace when I was at home or maybe even only when I slept. The day my pt told me that she had talked to my doctor and had found out that I would have to wear it 22 hours per day I was crushed. We were in the library of my elementary school and I did the only thing I could think of - I ran away. I knew a good hiding place in the school and ran as fast as my braced legs could carry me there. I sat by myself and cried for about thirty minutes and then made my way back to the library, resigned to the fact that I had no other choices - there was no alternative to wearing the back brace. Even though I had been diagnosed a full year earlier, Marfan becam e real to me that day.

The second day that stands out is my second trip to a Marfan Conference, this one in St. Louis. I think was about 15 at the time (I don't remember exactly which year the conference was in St. Louis, so I can't be sure of my age). Vincent Schiavelli was running a workshop for teenagers there and I thoroughly enjoyed meeting him. There were about twelve of us teenagers there with Vincent. We went around the room introducing ourselves and telling how much we were affected by Marfan. After everybody had introduced themselves I quietly realized that I was by far the most severely affected of all those present. It kind of bothered me and I couldn't let it go for quite a while. I had never thought of myself as a severe case, but then I had not known any other option that what I dealt with. So now I come to know that there are people who don't have to go through all the @#$@ I have to everyday. It really depressed me.

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Posted 8:01 PM
A poem by Georgia, for her brother John Morrell III

I watched you from a boy grow strong into a man when I saw you hold your baby girl I thought I knew god's plan

It was not to be my vision of your time. God had other plans for you and took you in your prime

I watch your little girl her heart so sweet and true and every time I look at her I see so much of you. She shares your stubborn temper she shares your smile too but more then anything she's a living part of you

A life cut short, so sad so true your memory lives on that I promise you.

You struggled through this life, your place you longed to find. I hold you now forever in my heart and in my mind. You are not forgotten nor were you left behind. So many things in day to day of you they do remind.

Baby brother loving son even brand new dad. You touched more people then you ever thought you had.

More then just the family you had so many friends so many people mourn for you their love they long too send this aching in my chest seems to have no end yours was not the only heart to broken to ever mend.

I miss you baby brother more then words could say. So many thoughts so many tears all my love I send your way
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Posted 7:32 PM
Guess which dancer has the Marfan syndrome?

Two Marfan sisters reach for the sky!
Thanks, N!
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Posted 7:01 PM
Another post from Gail, which she calls "Half Marf"
Both Gail's posts show how very difficult it is to get a clear diagnosis of some of these disorders.

Waving to Jeanette, and all on the Marfan-List!
Our son has symptoms of both Marfan Syndrome ( see National Marfan Foundation ), and Ehlers-Danlos Syndrome (see Ehlers-Danlos National Foundation ), but looks “marfanoid” being nearly 5’11’’ and only 9 stone. He has a narrow chest with a slightly depressed sternum (pectus excavatum). In common with many that have Marfan Syndrome, he has long limbs, hands, feet, fingers and toes.

The third picture shows the “Thumb sign,” considered by some to be an indication of the Marfan syndrome.

It has taken over two and a half years to get our son diagnosed as Marfanoid Ehlers-Danlos . One of the features both syndromes share is joint hypermobility. Our son has an overlap between the two disorders. Myself, and eldest daughter have been diagnosed with the Hypermobile type of Ehlers-Danlos Syndrome, and yet our granddaughter is said to be more marfanoid, showing the variability within just one family.

Not content with all this, our son also has syringomyelia (see The American Syringomyelia Alliance Projectwhich also helps people with Chiari 1 malformation, which is often the cause of syringomyelia ).

If anyone has Marfan Syndrome or Ehlers – Danlos Syndrome, and also Chiari 1 Malformation, with or without syringomyelia, I would like to hear from you

If you have Marfan Syndrome, or a Marfan – related disorder, I hope you do as I did, and join the Marfan–List (see Marfan-List). You will find a marvellous group of people always willing to help you, and your family,

With best wishes,
Gail
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Posted 6:31 PM
From Gail, in the U.K.
When our first child was born, she made “crowing” noises, much to the amusement of the medical staff, as my husband was then a poultry farmer. When our second child was born, she had inspiratory stridor; a crowing noise, like croup, she also became cyanosed very quickly. She was intubated. A spontaneous pneumothorax followed, which led to a tension pneumothorax, which was successfully relieved.

Her Dr. thought our eldest daughter had a milder form of her little sister’s problems, because of her peculiar cry in the first few weeks of life. At one week old our youngest daughter had a tracheotomy. At about one year old we noticed that she had pectus carinatum. We thought this was due to her efforts to speak, no yell, louder than her big sister. She tucked her chin down to cover her trache to speak, even sang, much to the amazement of her doctors. When 23 months old she had corrective surgery for the bilateral abductor vocal cord paralysis , she had by then been diagnosed with; sadly she died the night we brought her home.

We had a third child, who was born with bilateral talipes equino-varus . We didn’t care; he had no respiratory problems. When he had corrective surgery for his talipes, he had serious stridor on coming around from the anaesthesia, and prolonged bleeding. I had spoken to the anaesthetist, mentioning his little sister’s problems, never imagining he would have the same thing happen to him. (Our youngest daughter had been examined under anaesthesia; her airway obstructed by removing her trache, and covering her stoma, without any problems. However, on coming around from the anaesthetic, each time she had severe stridor, and her trache had to be quickly replaced).

When 22, I had seen a doctor, as I had pain in my lower back. He asked if I would stand up, and stretch both arms out to the side, and looked into my eyes. He thought my build, and blue sclera, suggested arthrochalasia multiplex congenita. I had lax ligaments, was very mobile, and would probably be in a wheelchair by the time I was 40, he said!

As our surviving children were growing up, they had problems with different joints; both often felt faint etc. I had the same problems, so I showed them how to cope. We made light of it. We stuck our heads in the sand.

Two years ago, ironically I was then reading “the language of the genes” by Steve Jones; our daughter asked if she was at risk of having an affected child. I found a lot of information on the Internet, and thought our youngest daughter’s vocal cord paralysis could have been caused by Chiari 1 Malformation (see Symptoms); our son had an MRI, which showed he has Syringomyelia, which is often secondary to Chiari 1 Malformation! I also looked into hypermobility problems; searched for arthrochalasia multiplex congenita, and found the Ehlers-Danlos National Foundation website. The arthrochalasia type of Ehlers-Danlos Syndrome (EDS) obviously wasn’t me….but the hypermobile type! Yes!

It seemed myself, and probably all 3 of our children, had a connective tissue disorder. Our youngest daughter having a spontaneous pneumothorax, and pectus carinatum, began to make sense, but I could find no mention of pectus carinatum in EDS. Drs. started saying our son was “strikingly marfanoid;” the pieces of the jigsaw puzzle began to fit together. We were looking not only at EDS, but also Marfan Syndrome.

Gail
North Yorkshire, U.K.
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Posted 6:13 PM

30 %

There's a 30 % chance that I'll survive the 'thon.
Will you survive the Blogathon? At least, according to the quiz, I have only a 30% chance of surviving, mainly because I'm alone, so very alone! My husband works midnight shift, so he's sleeping now, but I'm hoping he'll call me from work when the real hard time comes, after midnight! And my sister in Honolulu says she'll call me, too. I'm already getting very tired! I haven't yet checked out the Blogathon chat rooms because I've been busy preparing things to blog. I'll keep on blogging, but please forgive me if I get some things wrong! I can always edit later.
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Posted 6:00 PM
Another fund-raising event planned for this summer is in Pleasant Hill, Iowa. It is being held by the Heart of Iowa Chapter of the NMF in memory of another young man, Scott Kiefer, who died from Marfan complications in 2001. Here is the poster for the Walk - Run - Bike-a-thon, August 30th. All proceeds go to support Emergency Room Awareness, Pediatric Awareness and Marfan Research.
Download a copy of the brochure in Word .doc format that you can print and fill out if you're interested in participating! There is a .pdf version of the brochure on the Heart of Iowa website.

Thanks, Teri!
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Posted 5:30 PM
More Marfan haiku by Bryan Jones

hello my doctors
is it time for me to go?
"No, you have 9 lives"

my chest hurts again
a new but familiar pain
should i get it checked

limiting passion
may protect the marfan heart
the side-effects suck

"thump-thump thump-thump" is
sound of music to my ears
after the cutting

©Bryan Jones
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Posted 5:01 PM

Haley Dostalik

Haley is a beautiful, energetic, happy 3Ѕ year-old girl who was diagnosed last year with Marfan syndrome. We all marveled at her long fingers and toes after she was born and how tall she seemed to be in comparison to everyone else in our family. Little did we know these were telltale signs of a disorder known as Marfan syndrome.

When Haley was 1Ѕ, we noticed that her feet were extremely flat and that she was beginning to walk on the inside of her feet. A local orthopedic specialist diagnosed her problem as flexible flat feet and recommended we come back in a year unless things got worse. About six months later we returned and were referred to another orthopedic specialist. He noticed how hyper-mobile Haley was (we call her Gumby) and suggested we see a genetic specialist. Thanks to his keen observation, the genetic specialist ordered an echocardiogram and full eye exam and we discovered that our daughter has an enlarged aorta and mitral valve prolapse. Today Haley is on Beta Blockers and is doing terrific. She has started to show signs of scoliosis, but her prognosis remains great.

We encourage all parents to follow their instincts when it comes to their children. If something doesn’t seem right, it probably isn’t. If we hadn’t been proactive with Haley’s extremely flat feet, we never would have known that her heart was a ticking time bomb waiting to go off.

We feel extremely blessed to have such a special daughter and cherish every day with her. We look forward to sharing many wonderful experiences with her in the years to come.

Kari & Marty Dostalik
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Posted 4:41 PM
CNN.com - England braces for rubber duck invasion - Jul. 26, 2003
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Posted 4:33 PM
While I'm sitting on my rear, blogging for 24 hours in the Blogathon, others across the country are planning walk-a-thons, bike-a-thons and marathons. One Walkathon, dedicated to the memory of John Morrell III (see 10:33 am post), will be held in Port St. Lucie, Florida on August 17th at 2 p.m. Click here to see the poster (with picture of John and his little baby Zoie.)
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Posted 4:04 PM
Introduction
by Angela Hйbert

The dead circle my hair, flowers behind my head
smudges of ochre, white. The marigold at my
temple is a breath caught in glass, a window
of fingers in sightless wind. My father faded,
yet palpable in bloom. A hand curled, another hidden
in my coat. I turn to the flowers
breathe in and lose them

I always wanted to be drawn
thought someone else would conclude me.
Even science cannot explain why
my father and I were tall and thin
in a family of short, stocky frenchmen.
My father a tree among the smiling lumberjacks.
Brother Andrй of Quebec sent a blessed
oil for his eyes. Every night his mother
anointed him, but still
small objects eluded his searching hands.

©Angela Hebert

Used with permission. From The Marfan Writers Anthology, which can be purchased from the NationalMarfanFoundation.
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Posted 3:31 PM
MarfMan!
You'll need to click on the picture to make it bigger so you can read it, but it's worth it! I got a report that clicking on the picture does not allow you to see a larger version. If you're using IE, there should be a little box near the bottom right-hand corner of the picture you get when you click this(if you run your cursor over it) that allows you to view it full size. I hope there is something similar in other browsers!

Thanks, Thomas Schrantz!
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Posted 3:19 PM
USATODAY.com Hip Clicks - Since when is Ben Affleck an icon? VH1's got some 'splaining to do.
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Posted 3:01 PM
From Jenny, in Sweden
Ever since I was a child I've wanted to work at a library. I had no idea that I had the Marfan syndrome until I was 21 years old. And at that point I didn't know much about it and how it affected my body. I've always considered myself as weak and I've had lots of pain in joins and muscles. I have never thought that this would stop me from doing what I've always wanted, work at a library.

These recent years I've had the opportunity to work at a university library. I totally loved it, just as I thought I would! The only problem is that I have SO much more pain in my neck, shoulders and lower back. As I'm having these constant pains my temper isn't so good and I have a hard time finding peace and comfort on my free time. I doesn't even work full time, and I'm only 26 years old. I really don't know if I can find a job where I can work full time, without these pains.

It feels depressing to know that I probably can't continue with the work that I love so much. I just can't see myself doing anything else... Some parts of having this disease is just horrible. I haven't had any cardiac involvement or any other serious symptoms connected to the syndrome, and I'm glad I haven't. But it's not fun to only have 'minor' symptoms that affects the quality of life so much.

Best regards
Jenny in Sweden
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Posted 2:30 PM
A poem by Georgia

Times of decision    Times of trial
Times of fear    Days of denial

Praying in faith    Working on trust
To survive these fears this is a must

The day is coming      surgerys near
I hit my knee's        released my fear.

In your arms        I found peace.
I know my fears      I did release

No Matter what happens this I know
Where I am you always go.

©Georgia
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Posted 2:00 PM
From the "What's Good About Having Marfan" series from Marfan-List

1. No one tries to borrow your clothes or shoes

2. You can put things waay in the top back of the cupboard, and they will
be there for you later

3. You can always get the last (raisin, peanut, candy) out of the jar

4. You can see the parade.

5. You can tell people that you are outstanding in your field.

6. You can reach places in those little Japanese car engines.

7. You don't have to bend over to retrieve something. Your toes work fine.

8. Speaking of feet, you always have a solid foundation.

9. The clothes or shoes that are going to fit you at a sale will still be
there when other sizes run out.

10. There is nothing wrong with years of never having to diet.

Thanks, Sally! More to come throughout the day...

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Posted 1:30 PM
And now for a word from the blogger...
I woke up this morning around 3:00 a.m. and knew I needed to sleep if I was going to blog for 24 hours starting at 9 a.m. I couldn't force myself back to sleep, though! I will need some sleep at some point. Luckily, I can usually nap for ten minutes and wake up refreshed.

Marfan is a part of life for those of us with the syndrome. For some people, it's a big part of their lives; for others, it's a smaller part. While my symptoms are (so far) quite mild compared to some, I try to stay active in the Marfan community because I am aware of the condition (having been born with it) and because I have gotten to know -- through the Internet -- a lot of people who have worse symptoms than I have and parents whose children have been diagnosed with the disorder. Having grown up with the disorder, I never thought about what it would be like to have a child diagnosed with a potentially lethal disorder. There were plenty of times when I yelled, "I wish I'd never been born!" in frustration and anger, but I got over that phase, as most teens (Marfan or not) do. I want to reassure parents that if their child has Marfan, it does not mean their child's life will be completely full of misery. Marfan isn't the only thing that makes us who we are.

Throughout the day, I plan to blog some links to pages that may have nothing to do with the Marfan syndrome, but that are just fun or interesting. I thank my friend Todd for his help in locating links such as

Stupid News Headlines!

Todd does not have the Marfan syndrome -- he's just a friend who finds good links. Todd's father was recently diagnosed with kidney cancer, so I want to include a link to Dealing, from the Kidney Cancer Association. As it says on the Dealing page, "Successful patients can learn about their disease and how to use the health care system to get the best care. Information empowers people." This applies to any disorder or disease you may encounter.
Thanks, Todd, and good luck to your father!
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Posted 1:01 PM
Speaking of long fingers -- Bob H. says his thumb makes hitch-hiking easy!

Thanks, Bob!
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Posted 12:31 PM
Check out the long fingers!
Here's a picture of Haley Dostalik as a baby. More pictures of Haley will be coming up later in the day - she's now a gorgeous three-and-a-half year old.

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Posted 12:01 PM
Tall Magazine is a new magazine by and for Tall people. They did not ask me to advertise for them here. Since they are a member of the Independent Press Association, I don't mind mentioning it, as something people who are tall may find helpful for them. You can download the entire first issue in .pdf format for free at their website.
Says the publisher, Everard Strong, "Life may be short ... but we're not."

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Posted 11:31 AM
Funny story about being very tall, by Mark
I used to live in Japan, which caused a long list of funny things to occur, since the average height of men is about 5'6" and women is a little smaller. I'm 6'8", so I really stood out in a crowd. A few things were really funny, but one sticks in my mind.

I once had to meet a few friends at a train station in Tokyo. The station is called Shinjuku and is the busiest train station IN THE WORLD. There were literally tens of thousands of people milling around inside this huge station. About three friends and I had to meet three other people on a certain platform. We didn't know it, and we couldn't see because the platform made a slight curve, but we were waiting on one end of the platform, and our friends were on the other (about 75 yards away). After about 30 minutes of waiting, my friend Chuck went out the the man watching the ticket gate. He asked the man in Japanese, "Did the tallest man you've ever seen go though here today?" He nodded and pointed over to the other stairway. Chuck went up, and there I was. We got a good laugh about that.

Thanks, Mark!

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Posted 11:01 AM
Click link for a story (including picture), published yesterday, in the Zanesville, Ohio TimesRecorder. Little girl granted wish for Disney trip. "Destiny said she's looking forward to flying in an airplane and later seeing her favorite Disney characters.

'I want to be able to look outside the window and see clouds,' she said. 'I'm going to put Aunt Cindy in my suitcase.'
Destiny's Make-A-Wish was submitted by her doctor. She has Marfan's Syndrome, an abnormality involving connective tissue.

People with the syndrome are more likely to develop enlargement of the aorta, the main blood vessel leading from the heart to the rest of the body, according to Johns Hopkins Medical Institution Web site at www.medhelp.org."
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Posted 10:33 AM

1998, happier times. John III, middle, had the Marfan syndrome, as does his mother and sister (not shown). John III lost his life to an aortic aneurysm in 2002 at age 19
Click picture for larger version

One of the most difficult aspects of having Marfan Syndrome is the astronomical medical costs that are incurred while getting tested, and treated for the disease. As an example, my wife just had her first ever MRI's to make sure she had not developed an aortic aneurysm. My son never had an MRI and as a result he died at age 19 from an undiagnosed (by the $1,200.00 echocardiogram he had a few months prior to his death) aortic aneurysm. Just today I received an explanation of benefits from my health insurance company. Cost of the two tests $5,300.00, plan allowance-zero, I owe the provider $5,300.00. Two months ago my daughter underwent an outpatient cardiac ablation procedure, her hospital bill for the 12 hour stay was $36,000.00.

I have a box full of literally hundreds of insurance forms reflecting other health care costs we have encountered as a direct result of Marfan Syndrome over the past few years. The bills would be impossible to pay for 99.9% of the population without the assistance of health insurance, which is becoming more expensive and harder to obtain every year. Luckily we have not had to do without any needed health care, but I know of Marfan families who are unable to afford the medical care they, and their children, need to live relatively normal lives. It's hard to imagine how difficult it must be to know help is available for your child, but be unable to pay for it.
Thanks, John!

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Posted 10:01 AM
Catherine (19 mos.) and Caden (29 mos.) both have the Marfan syndrome as a result of a spontaneous mutation. (In other words, no one else in either family has the syndrome.) Thanks, Anne!

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Posted 9:30 AM
Marfan Haiku from Bryan

warm sun on my chest
why do people stare, am i
a beauty or beast

in the warmth of love
i let my scars be touched
and they gently fade

thin fingers, sculpture
resting on the steering wheel
i admire the form

©Bryan Jones
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Posted 9:02 AM
First things first: What is the Marfan syndrome? It's a genetic disorder of the connective tissue. People born with Marfan are usually (not always, but usually) taller and thinner than most people in their families. Later in life some people tend to put on the pounds at least around the middle -- others never do -- but usually our limbs are long and lanky. While being tall and thin may seem like a good thing (and in some ways it is -- you'll find out why if you read this blog more during the day!), the bad thing is that connective tissue is very important to keeping the body together. Every part of your body has connective tissue, and if it's weak and defective, that's not good.

During the day today, I'll be blogging to let people know what the Marfan syndrome is all about. It often goes undiagnosed -- many doctors are unfamiliar with it, and sometimes it seems you have to knock them over the heads with your symptoms and literature about Marfan for them to take you seriously -- but it is a serious disorder. Knowledge and awareness about it is the key to ensuring as long and healthy a life as possible.

I'm blogging for the NationalMarfanFoundation, which is the very best place to get medical information about the syndrome that has been approved by it's professional advisory board.
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Posted 6:03 AM
'Nother article: PCWorld.com - Blogging Around the Clock for Charity. Less than a day to go before it starts!
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Posted 11:12 PM
Blogathon's getting a lot of press! InfoWorld: Bloggers plan round-the-clock charity drive
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Posted 7:46 PM
MSNBC has a really good article about the Blogathon! See Typing for a good cause
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Posted 7:17 PM
Letters to the Editor: Daily Press, Hampton Roads, Virginia Scroll down to the third letter. It's about Marfan Blog in the Blogathon. I had to edit the letter a lot, and then the editor also edited it a lot, so it's mostly just about Marfan syndrome. Thanks, Gail and Lisa!
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Posted 11:11 AM
My commenting service (Enetation) appears to be down at the moment, and was making my page hang forever. Since this is the first day the Blogathon web ring is up and running, I figured I'd better disable comments for now so at least people wouldn't get stuck while going through the ring. I sure hope it's back up by Saturday morning! Sorry for any inconvenience experienced earlier, if you come a-knockin'.
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Posted 10:17 PM
New York Liberty Celebrates National Girls and Women in Sports Day: "National Girls and Women in Sports Day began in remembrance of Olympic volleyball player Flo Hyman for her athletic accomplishments and dedication towards achieving equity in women's sports. Marfan's Syndrome took Hyman's death in 1986 during a volleyball tournament in Japan."
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Posted 12:57 PM
Mathew Rudes is quoted in today's Parade magazine in an article about chronic pain. (The article is not in the online edition of Parade.) Matt is an incredible guy. Having been born with severe Marfan symptoms, he is in chronic pain. Yet he maintains a 4.0 average in school, loves to write and has done very well in his school's debate team. Chronic pain is not necessarily a symptom of Marfan syndrome, but many people with Marfan do have chronic pain. Doctors are not certain why that is the case.
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Posted 12:50 PM
Having trouble sponsoring me in the Blogathon?
I have heard from a few people who have said they are confused about how to sponsor me. When you go to sponsor me (or anyone), you are presented with a login prompt for username and password, but you don't have a username or password for the Blogathon site. If you try usernames and passwords from other organizations, websites, your ISP, or whatever, the name/password won't work.

You need to first register on the Blogathon page by filling out your (real) name, your (real) e-mail address, whatever username you want to use, and whatever password you want to use. You get to the registration form by clicking to sponsor a site. At the top of the resulting page, you will be asked to input your username and password, but you don't yet have one. Scroll down and you will see where to start an account. For instance, to sponser me, click here, then scroll down to input your personal information. I trust the Blogathon people to not sell your e-mail address. This e-mail is used first to make sure you are registering yourself. You will receive an e-mail with simple instructions to confirm that you received the e-mail and really do intend to sponsor. Also, the e-mail is used to remind you, after the event, that you had agreed to donate to the charity. You send your check directly to the charity. You do not send money online (unless the charity has an online donation service). Money does not cross my hands or the Blogathon people's hands.

If you want to sponsor another person for another charity besides or instead sponsoring the Marfan Blog, go to the Participants List. The page takes a while to download because there are so many bloggers taking part (great!). You'll see the many different bloggers who are blogging for many worthwhile charities. You can sort this page using one of the criteria listed above the list. To see some of the Hot Spots (bloggers with themes or gimmick), click on Hot Spots. (Marfan Blog is there, under Other).

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Posted 8:16 PM
Here are a few key terms use in Marfan syndrome. A lot of people have been asking for a glossary or vocabulary of Marfan terms. There are more that need to be defined for the newly diagnosed (and those awaiting diagnosis), but these are a start.
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Posted 8:48 AM
Important request!
I have promised to show the world the various aspects of our Marfan community during the Blogathon 2003 next week, July 26. I hope you will please help me do that by sending me material to blog! If you have Marfan or a related connective tissue disorder (including, of course, those who've been dis-diagnosed or whose Marfan diagnosis is tentative) or you have any experience with Marfan and have an interesting annecdote, a poem, short (a few paragraphs) essay, Marfan pictures you want to share, please send them to me now or as soon as possible either via e-mail or by filling in my Marfan Blog Blogathon request for materials form. I want to get all perspectives of Marfan -- good, bad, confused, etc. Also, any tall jokes, tall trivia, titles of tall-related songs ("Long Tall Sally," etc.). Thanks so very much!
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Posted 8:19 PM
My friend Todd keeps giving the Hip Clicks columnist (USA Today Online) great links. He gave her the link to the Blogathon 2003 and mentioned my participation in it! Read the column (scroll down the bit to see the mention of the blogathon) by clicking USATODAY.com - Reader Clicks Thanks so much, Todd!
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Posted 8:16 PM
Roanne Weisman, author of Own Your Health, and her son, Ben, were interviewed on New England Cable News regarding her book. Click here and then click on the Play icon for Alternative Medicine to play the video. Good going, Roanne!
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Posted 10:04 PM
I'm leaving tomorrow morning for Chicago and the NMF 2003 Conference. I'll be back early next week. I probably won't have access to a computer between now and then. If you send an entry for the Marfan Contacts page, please know I'll add or edit it as soon as I can.

Please do consider sponsoring me in the Blogathon 2003 (see below). I am very tired right now, and I haven't been up more than 14 hours. It will be hard for me to stay up 24! See if you can entice me to with your pledge! I am hoping to blog stories, thoughts, maybe poems written by people with the Marfan syndrome to let others know how life with Marfan can be different from others in some way, and the same in many ways. Then stay up late and check this Marfan Blog for a new entry every half hour! (Or go to bed, sleep tight and then check my blog in the morning of July 27 to see if I made it through).

I've got to get to bed now to catch a very early flight. See you later!
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Posted 9:53 PM
Sponsor me in the 2003 Blogathon! On July 26th, beginning at 9 a.m. EDT, I am going to try to stay up for 24 hours, blogging once every half hour, for the 2003 Blogathon! Please consider sponsoring me. I'm blogging for the (guess!) NationalMarfanFoundation. I'll have to post 48 entries in one day, and it will all be Marfan-related. Maybe I'll have pictures from the conference then and will post them.
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Posted 10:04 AM
From Erie, Pennsylvania: Adoptee fears what fate awaits family after the death of her son Stephen. I also found a letter to the editor written by Stephen's grandfather from the same paper from September 22, 2002.
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Posted 12:13 PM
I'm thinking of creating some Marfan-related t-shirts (in sizes that will fit skinny Marfs as well as larger ones). But it's an expensive endeavor, and I don't know if enough people would want them to make it worth my while. One idea I have is at this link: possible black MarfanLife t-shirt. I have also thought (instead of "A network of spiderfingers") "a family of spiderfingers" or just "Spiderfingers." However, I don't necessarily have to have anything with "spiderfingers" on it. Also, I do not necessarily want to have www.MarfanLife.org on the shirt, at least not in large letters. But I may. It depends on whether or not I can find something that people would want to actually pay for (so I can get the money I put into it back -- I do not expect to make a profit!) If anyone has any good ideas for something that will help other people see the word Marfan, and in a positive light, please click on Comments and add a comment or two! Any ideas?? Any thoughts or other comments? (PS - It cannot be NMF-related).
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