MarfanLife.net | News blog

Daily Record High School Sports - Profound Rebound Milesky may have been in the best shape of his life, but that was before the high school senior was diagnosed with Marfan syndrome, a hereditary disorder that affects the body�s connective tissue. … “I wasn�’ allowed to play any contact sports,” Milesky said. “(The doctor) removed me from all sports. I was able to play golf. I played golf last year. I was allowed to bowl but we didn�t have a bowling team. Even though I was diagnosed, I still tried to be as active as possible.”
“Which is easier said then done when you have been a competitive athlete for as long as you can remember and a lot of your friends are playing competitive sports.” …
“Being a competitive athlete, Milesky wasn�t someone who could just stand on the sidelines and let his senior year slip away. He was determined to do something about it even if it meant risking his life.”

He is risking his life. Please think twice, thrice, four or five times, before following his example. There are many, many more things in life to do than play sports. -Jeanette

Marfan syndrome not simple to diagnose: “Q: I saw a television special about Marfan syndrome and now think my 11-year-old daughter might have it because she has many of the traits described. How can I put my mind at ease? Is there a test for this?”

From BMEzine (apparently Body Modification E-zine): The most extreme modification you can get… heart transplant.: “The reason that this was really bad news to me is that I run a suspension group in the greater Seattle area. I have suspended probably well over 40-50 times. I love it. And now having this valve pretty much meant I was never going to be able to suspend again, or I may very well bleed to death. As it was piercings and tattoos would probably be ok, but both will bruise horribly and bleed profusely.”

Beautiful Names of Allah to be Echoed in London:British musician Sir John Tavener who received widespread acclaim for his composition of God’s 99 names entitled “Beautiful Names” (Esma’ul Husna) plans to perform in Westminster Cathedral in London.” … “Tavener is constantly growing due to a disease called Marfan. The musician currently stands at 1.97 nowadays sees his illness as a gift from God.”

Ummm…. I don’t think “constantly growing” is a part of the Marfan syndrome. People with Marfan do stop growing. -Jeanette

Yale: Congenital Heart: Marfan’s Disease: “Small retrospective studies suggest an increased risk of aortic dissection in women with Marfan’s syndrome who become pregnant. In women with preconception aortic dilation, greater risk is due to the changes of cardiac output and plasma volume that occur by the 6th week of pregnancy and the increased stress during labor. Vaginal delivery is acceptable in patients with Marfan’s and epidural anesthesia may be helpful in lowering the blood pressure at delivery. However if the aortic root is greater than 4 cm a cesarean section should be considered.” … continued (click link above).
This page has a good diagram of heart, animation and echos

TheDenverChannel.com - Health - Could Genetic Testing Help You Prevent Future Problems?: “‘Adults with genetic conditions really have been underserved,’ said Dr. Matthew Taylor, director of the Adult Medical Genetics Clinic at CU’s Health Sciences Center.

But that status is changing thanks to nearly 1,000 genetic tests now available. At the Adult Genetics Clinic at the University of Colorado Hospital, people like Kristen Stein can get life-changing information.

‘They told us there was a genetics test for Marfan’s (Syndrome) and up until that point we thought it was diagnosed based on certain characteristics,’ Stein said.”

PENN begins clinical trial of newest technology to treat thoracic aortic aneurysms

Henry Floyd hopes bracelets will educate other on Marfan syndrome
“Henry Floyd is asking people to wear their heart on their sleeve with a symbolic red silicone wristband.
The National Marfan Foundation’s ‘Have Heart’ bracelet is the only one on 10-year-old Henry Floyd’s arm. Henry has Marfan syndrome, a connective tissue disorder, and far from hiding his disease, Henry hopes to make more people aware of its existence. ” -Daily News Tribune - Local News Coverage

USOC to Host 2005 National Girls and Women in Sports Day Celebration at Colorado Springs Olympic Complex National Girls & Women in Sports Day was established by a Congressional resolution in 1986 to celebrate the achievements of girls and women in sports. The first NGWSD was organized to remember and honor 1984 Olympic volleyball silver medalist Flo Hyman, who died of Marfan�s Syndrome during a volleyball game in 1986. The national celebration, recognized in all 50 states with community-based events, awards and other activities, calls attention to the positive influence of sports and fitness participation and to advances in the struggle for equality and access for women in sports.

Marfan Life Online Shop | CafePress This is just a reminder that there are still MarfMan t-shirts, mousepads, posters and lunchboxes available through Cafe Press! See a larger design at http://www.marfanlife.org/marfman.html (Click on the thumbnail there).