Category Archives: medical ethics

Have a Heart: Allie again

More pictures of a girl who, according to the experts, should have been sacrificed to IVF, a Petri Dish and dissection for ESCR purposes to “save her from suffering”:


Age 6, an old fashioned phone booth at the Museum with Gianna and Joe.


Also Age 6, with Gianna and Joe

Age 7, MOVES class recital (dance class for disabled kids at Columbia College–great program!)

Age 7, self-portrait


Age 3 (close to 4) , holding Josef

Pray with Allie on Hide Me In Your Wounds.

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Have a Heart: Jonathan Larson, composer of _Rent_

Died of Marfan syndrome after 2 ERs misdiagnosed his aortic dissection:


RIP

Have a Heart: Info from the National Marfan Foundation

Diagnostic Criteria for Marfan Syndrome.

“Living with Marfan syndrome”: Cardiovascular

Cardiac Emergencies

Eye Emergencies

Lung Emergencies

Children and Teens

Treatment

Skeletal Features

Have a Heart: Brent Collins–Actor, Marfan, and Dwarf

Brent Collins was an actor who had the strange genetic admixture of Marfan syndrome and dwarfism. A sudden growth spurt in mid adulthood led to his death in 1988. He starred on As The World Turns (1982-1983) and Another World (1984-1987), and was very prominent on the latter series. He had a few guest starring roles, most notably on an episode of _The Golden Girls_.

On _Another World_:

May he rest in peace.

Have a Heart: “Mo” Trailer

Image

Have a Heart; Diagram of an Aneurysm in the Aortic Root

Engineer with Marfan syndrome designs new aortic implant

An engineer in Tewkesberry, England, Tal Golesworthy, has used his engineering skills to develop a new aortic implant that doesn’t require either Coumadin or immunosuppression. It’s informally called “Tal’s exostent,” and as I understand it, it goes over the natural aorta to keep it from rupturing or continuing to expand. Each one is custom made to the patient by using a combination of MRI technology and CAD design. Golesworthy teamed up with a couple cardiothoracic surgeons to design the device, and was the first recipient of his own invention. Since 2002, 23 Marfans in the UK have been successfully treated with the device.

Will the FDA, which allows the deadly RU-486 drug, permit this to be used in the US? Well, let’s see: where are the ethical vaccines that work in other countries? Where is the ClearPlan NFP machine? Where are Allie’s lens implants?

http://www.theengineer.co.uk/in-depth/analysis/uk-engineer-develops-own-life-saving-implant/1006877.article