Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~
Curvature of the spine Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness Weakening of the connective tissue, most dangerously of the aorta
Sponsor me in Project-Blog!
See details here or go directly to
Chicken
Soup for the Fisherman's Soul Jennie Logsdon Martin has a story in here. Her story is as much about living with the Marfan
syndrome as it is about fishing.
Own Your Health
Roanne Weisman and her son have Marfan, and in some sections of the book they share their experiences. Amazon.com
The Truth About Chronic Pain
A whole chapter is about Mathew Rudes' experiences. Mathew was born with severe Marfan symptoms.
20th Annual National Marfan Foundation Conference, July 7-10, 2004 Posted at
12:04 AM Newswise: 20th Annual National Marfan Foundation Conference, July 7-10, 2004: "An early diagnosis and the necessary medical treatment interventions such as medications to lower blood pressure can save a person's life," said Dr. Siegel. "If people have signs of the Marfan syndrome, they should speak with their doctor."
Boston Globe / Arts / 'We want him to be totally normal' Posted at
7:48 AM Boston.com / News / Boston Globe / Living / Arts / 'We want him to be totally normal': "Other than being taller than most of his playmates, third-grader Henry Floyd blends in easily whether in a schoolyard kickball game or a neighborhood touch-football scrimmage, which on a sunny spring afternoon attracts a group of roughhousing boys eager to practice their best Tom Brady and Tedy Bruschi moves." Great, long article about Marfan, local Boston folks with Marfan, and the Rent Gala
TheBostonChannel.com - HealthBeat - Show To Raise Awareness About Deadly Disorder Posted at
7:50 AM TheBostonChannel.com - HealthBeat - Show To Raise Awareness About Deadly Disorder: "BOSTON -- When the curtain raises on the show 'RENT' Tuesday at the Wang Center, some local families are hoping it will also raise awareness about Marfan's syndrome -- a disorder of the connective tissue that could lead to sudden death. "
"Yamil, 4, is one of those at risk. When he was just 18 months old, his mother recognized he was growing disproportionately, with extra long arms and legs.
"We went to look for Easter shirts and there were no shirts in his size that would reach the appropriate length for his arms," Yamil's mother, Suzanne Kouri, said.
"Marfan Blog" now simply "Marfan Life" Posted at
6:53 AM The blog part of Marfan Life doesn't need its own name. Blogging is a part of life these days; the Marfan blog is simply the most current and up-to-date part of Marfan Life. Please check out the Contents of Marfan Life to find other pages of information on this site relevant to people with the Marfan syndrome. Please keep in mind that the best place for medical information about the Marfan syndrome is theNational Marfan Foundation.
NMF Conference 2004 in L.A. July 7-10 Posted at
11:35 AM I'm planning to go to the National Marfan Foundation conference at the Beverly Hilton in July. It'd be nice to see who else is going. If you want, you can add a comment to this post and (if you're not a Blogger user), post anonymously but somehow let us know who you are. If you're a subscriber to Marfan-List, let us know that, too! Keep in mind, though, that if you do not want the world to know you'll be there, do not add a comment with personal information. This is indexed in most search engines; please keep that in mind.
Mutant human stem cell lines created Posted at
4:02 PM AxisofLogic/ Mutant human stem cell lines created : "'This is a significant advance for the field,' says Leonard Zon, president of the International Society for Stem Cell Research (ISSCR), speaking to Associated Press. 'We may learn a lot about the biology of basic diseases by having those lines available.'" ... "The flawed ESC lines developed also include mutations that cause Marfan syndrome, myotonic dystrophy, neurofibromatosis type 1, Fragile X syndrome and Fanconi anaemia."
Marfan syndrome may have led to player's death Posted at
11:42 PM Marfan syndrome may have led to player's death: "Florida State University did not test Ronalda Pierce for Marfan syndrome, a genetic disorder coroners suspect might have led to her death, a university official said Wednesday. FSU athletic spokesman Rob Wilson said he was restricted by privacy regulations from discussiong Pierce's medical records, but he could confirm she was not tested for Marfan while at the university."
Tallahassee Democrat | 06/09/2004 | FSU basketball player dies Posted at
6:26 AM Tallahassee Democrat | 06/09/2004 | FSU basketball player dies: "Parade magazine named Pierce a third-team All-American after her senior season at Turner County High School in Ashburn, Ga., where she rewrote the school's record book and had her No.55 retired. She played 29 games off the bench last season at FSU, averaging 5.3 points and 3.5 rebounds. 'She was a soft-spoken kid with a big heart,' said Lauren Bradley, who was a senior on last season's team. 'She would do anything for anybody, and she was really willing to learn. You could just see her grow so tremendously as a person and as a player." ...
"People with Marfan syndrome are advised to avoid physical sports, including basketball, as well as any strenuous activities that can potentially place stress on the aorta.
"'I can confirm to you we do not test for Marfan syndrome,' FSU spokesman Rob Wilson said.
"An echocardiogram, which uses sound waves to produce an image of the heart, and a slit-lamp examination of the eyes are often used to assist in the diagnosis. But Eileen Masciale, director of communications for the National Marfan Foundation in Port Washington, N.Y., said physicians need to be able to first see the big picture.
"'There's no simple test,' Masciale said. 'It takes a physician who's going to see the whole person - or an ophthalmologist who sees somebody has a dislocated lens and knows that that's the hallmark of only a couple things.'"
Sports: FSU basketball freshman dies Posted at
6:21 AM Sports: FSU basketball freshman dies: "Police found no indications of foul play and medical examiner Stephen Sarbeck said an aneurysm ruptured [Ronalda Pierce's] aorta, the large blood vessel that carries blood away from the heart. The police investigation will remainuntil a final report is issued from the coroner's office. 'It could be Marfan or a Marfan-like (condition), but it could be other things, too,' Sarbeck said. 'We have to rule out other conditions with other testing - toxicology, tissue studies, microscopic studies. It's going to take four to six weeks.'"
Sports can aggravate Marfan syndrome Posted at
6:18 AM Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome: "People diagnosed with Marfan syndrome are advised to make changes in their lifestyle. Refraining from vigorous sports is at the top of the list. 'With your heart rate up and your blood pressure up as you work harder, the blood pumps harder,' said Eileen Masciale, director of communications for the National Marfan Foundation. 'And with the aorta, the wall is weak in Marfan syndrome. You don't want the constant pounding of the blood in there because that would just enlarge the aorta to the point where it could tear or rupture.'"
FSU women's basketball player, 19, dies - (United Press International) Posted at
10:54 PM FSU women's basketball player, 19, dies - (United Press International): "'Words cannot begin to express the loss we feel,' said FSU Coach Sue Semrau. 'Ronalda was a very special person and although she was with us for such a short time, she enriched our lives in many ways.'" Links to more articles are below
AHA publishes statement on exercise and those with congenital heart defects Posted at
10:03 PM The Right Workout for Those With Congenital Heart Defects: "Children, teens and young adults with genetic heart disease can exercise recreationally but need to get advice from their doctors about the kinds of physical activity that are safe, a new American Heart Association scientific statement recommends.
The statement, published in the June 7 issue of Circulation, is meant to help doctors counsel patients who have an increased risk for sudden death while they're doing physical activity. This includes people with a number of kinds of genetic heart disease such as: hypertrophic cardiomyopathy; arrhythmogenic right ventricular cardiomyopathy; Marfan syndrome; and ion channel diseases, including long QT syndrome, Brugada syndrome and catecholaminergic polymorphic ventricular tachycardia."
Florida State University basketball player Ronalda Pierce dies Posted at
7:05 PM Here are links to a few more stories about Ronalda Pierce's death. She was just 19 years old. From the Tallahassee Democrat FSU women's basketball player dies
Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com) Posted at
5:58 PM Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com) Florida State basketball player Ronalda Pierce died early Tuesday, apparently from an aneurysm that may have resulted from a genetic disease that typically affects tall people.
What are all these changes?? Posted at
12:42 AM I've been making some changes to my websites, as you can see (if you've been here before). The major changes are to the Marfan-List site (which I've completely redone) and I moved this Marfan Blog to this front page of the Marfan Life website. What used to be on the front page is now on the Marfan Life Contents page.
I hope this doesn't mess anyone up. I'm trying to make things easier and better, not worse. I've still got some work to do on both sites, so right now, it's not perfect.
I'm getting ready for Project Blog (for one thing) and I want to add more easily accessible pictures to all pages. It might take all summer, though!
