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
Site created & updated by Jeanette NaviaBooks of Interest
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.
Marfan Blog
(news stories, events, newly discovered links)
Thursday, March 31, 2005
DenverPost.com From Tragedy, a Helping Hand Posted at
7:26 AM DenverPost.com - LOCAL NEWS: "Marfan syndrome has devastated Janette Michaud's family. She and her twin are organizing a support group."
Severance - She had never heard of the deadly disease that may have afflicted Abraham Lincoln and perhaps Osama bin Laden until it began destroying her own family.
Pantagraph.com - News - Greenberg: Here's to your health and [the Pantagraph's] health coverage 03/27/05 Posted at
8:19 AM Pantagraph.com - News - Greenberg: Here's to your health and our health coverage 03/27/05 "My name is Cassandra Embery and I am writing in response to your article in today's (March 21) paper about Brianna. I am 20 years old and was diagnosed with Marfan's Syndrome. I couldn't help but feel that I am not alone anymore with this."
Science whiz [Marissa's brother] wins honors for robot, windmill Posted at
6:53 AM Craig Broady wins honors for robot, windmill: "In early March, 14-year-old Craig Broady of Swampscott and fellow students at Boston University Academy brought a robot to a national competition in New Hampshire. The 5-foot tall skeletal robot moved autonomously and by remote control on wheels and picked up pyramid-shaped objects with an arm. "
Flexing her might: Girl helps get word out on Marfan Syndrome Posted at
6:43 PM Flexing her might The 10-year-old Bloomington girl enjoys demonstrating her flexibility. But what would be a fun, living-room display of agility by some children is an illustration of a life-threatening condition by Brianna. Great article. Good for you, Brianna!
Davie Smith was found dead in his bed by his shocked mum, Linda.
The labourer ignored doctors' warnings to avoid sport and socialising and insisted on living life as normal as possible. Linda said: 'He wasn't supposed to play football but he wanted to live life to the full."
This is a story from February, but I'd missed blogging it at the time
Death of young coach focuses attention on heart health Posted at
8:07 AM Daily Freeman - News - 03/17/2005 - Death of young coach focuses attention on heart health: "THE DEATH of a 29-year-old coach and physical education teacher who collapsed during a Kingston foot race on Sunday has local cardiologists urging people to be aware of potential cardiac problems." He may not have had Marfan, but the article stresses the importance of awareness of cardiac concerns
Marfan syndrome in Europe. Posted at
9:55 AM Marfan syndrome in Europe.: "OBJECTIVES: Marfan syndrome (MFS) is a relatively frequent systemic connective tissue disorder with an important physical morbidity and mortality. The influences of MFS on physical problems, perception of severity, and impact on the quality of life and psychosocial well-being have been studied only limitedly. The aim of this study was to assess the association between the severity derived from the reported symptoms and subjectively experienced severity of MFS (expressed as a global judgment), with special emphasis regarding impact on relationships and pregnancies, psychosocial adjustment, and differences between the seven European countries."
'Noles rise to challenge: South Florida Sun-Sentinel Posted at
9:59 AM 'Noles rise to challenge: South Florida Sun-Sentinel TALLAHASSEE -- The news came at 5:46 Sunday afternoon. Gathered together to watch the unveiling of the NCAA women's basketball tournament bracket on television, Florida State players and coaches cheered when they learned they had earned a No. 6 seed and will play the University of Richmond on Sunday in Storrs, Conn.
Severance, Colo. : Woman's daughters, husband and grandson affected by genetic disorder Posted at
9:57 AM Greeley Tribune - News: "Janette Michaud can't go through any more pain.
In a matter of 19 years, the Severance woman lost her husband and two daughters to Marfan Syndrome, a genetic disorder that affects the connective tissue."
Party for 'Purple' will remember his birthday Posted at
10:49 PM Pendle Young Musician in Colne, Essex (UK): "A memorial party for Jason Ward (25), known to many as Purple, has been organised by his family, and will be held at Atlantis, at the Hendly Hotel, on Friday, celebrating what would have been his birthday this Wednesday. But the partygoers will not just be remembering Purple's life ? they will also be learning about Marfan Syndrome, the condition which led to his tragic death."
Newport News-Times: Family works to save son's heart Posted at
10:44 PM Newport News-Times: Family works to save son's heart: "To the casual observer, Alex looks every bit like a normal n albeit very tall n confident young man. The concave depression in his chest is easily hidden by clothing. He said he gets self-conscious, however, iwhenever I go to a swimming pool, I walk around with my arms up. And I canit play sports, I'm always short of breath." ... "Alex's other condition, bicuspid aortic heart disease, involves his aorta - the largest artery which carries oxygen-rich blood from the heart to the rest of the body. Alex's condition involves an enlargement in the ascending aorta, the section of artery near the aortic root, which is under the most pressure and handles the greatest volume of blood."
Clinical Trial Of Newest Technology To Treat Thoracic Aortic Aneurysms Begins Posted at
6:48 AM Clinical Trial Of Newest Technology To Treat Thoracic Aortic Aneurysms Begins: "Philadelphia, PA -- A clinical trial is underway at the Hospital of the University of Pennsylvania (HUP) to study the safety and effectiveness of an endovascular medical device to treat life-threatening thoracic aortic aneurysms. Ronald Fairman, MD, Chief of Vascular Surgery at HUP, is leading the study at Penn and is one of 35 principal investigators in North America to participate in this landmark trial."
Kurnitz memorial Posted at
6:41 PM Kurnitz memorial: "The family and friends of Julie Kurnitz, the singer and actress who died July 15 at the age of 61 of Marfan syndrome, will celebrate her life at a memorial service at 4 p.m. Sat. March 19 at Judson Memorial Church, 55 Washington Sq. S."
Letter to the Editor of The Daily Record from the NMF (see article blogged below, "Profound Rebound") Posted at
8:12 AM Marfan Syndrome: "I read Mark Kitchin's article about Ken Milesky, a high school athlete who was diagnosed with the Marfan syndrome, with great interest. It is quite difficult for anyone to be diagnosed with a chronic, progressive condition that is life-threatening; it is probably the most heart-breaking for a youngster who must give up competitive sports which significantly contribute to his identity.
"Replacing a section of the aorta when it is enlarged -- the procedure that Milesky went through --can prevent that portion of the blood vessel from tearing. However, it is important to note that the rest of the aorta is still at risk of enlargement, which could lead to a tear or fatal rupture. ..."
The Bristol Press - Debunking myths about Marfan Syndrome Posted at
8:04 AM The Bristol Press - News - 03/06/2005 - Debunking myths about Marfan Syndrome "... Often thought of as a tall person’s affliction, "the first of many misconceptions about the illness is that height is in no way a criteria for Marfan Syndrome," Silverman said. "I’ve met many who are short.The ratio of upper torso to lower body is a criteria, but tallness doesn’t have any thing to do with it."
"The syndrome is named for its discoverer, Antoine Marfan. It is an inherited disorder but the gene that is responsible for Marfan is complex, and produces a significant number of small mutations. ..."
Japan: Results of Aortic Surgery in Patients with Marfan Syndrome (abstract) Posted at
10:13 PM SpringerLink - Article: "Purpose We reviewed the outcome of aortic operations in patients with Marfan syndrome to evaluate the immediate and long-term results of surgical treatment."
