'In My Hands': A Film About Life With Marfan Syndrome

I strongly recommend that everyone see In My Hands, a powerful and moving documentary about people with Marfan syndrome. All of us either suffer from, or love someone, who as a result of the nature of accident, is living with a physical or mental problem. In My Hands is a powerful testament to human resilience and understanding, one that will help each of us with our own lives.

Instructions on how to obtain a copy of the film are provided by the website of the National Marfan Foundation.

The Event

This month, the New York Academy of Sciences hosted a screening and panel discussion of In My Hands. The panel discussion featured Ann Reinking, an actor-dancer whose teenage son has Marfan syndrome; the film maker Brenda Siemer Scheider, widow of Roy Scheider; Ben Carpenter, a Connecticut banker who has the syndrome; Hal Dietz of Johns Hopkins, a doctor specializing in the treatment of Marfan syndrome; and Ron Lacro of Harvard Medical School. Dr. Dietz discovered the gene variants underlying the syndrome and has developed a new approach to treatment using the drug losartan. With Dietz, Ron Lacro is coordinating the losartan trials. The panel discussion was moderated by Richard Murray, Vice President of U.S. Regional Medical Affairs at Merck. The event was presented in partnership with the National Marfan Foundation and Merck.


Marfan Syndrome

People with Marfan are typically tall with very long arms and legs, and long thin fingers and toes. The connective tissues throughout the body are weaker than normal. Some with Marfan have very flexible joints. Enlargement of the aorta where it joins the heart is the most serious consequence of the syndrome, as are defects in heart valves. If left untreated, aortic tears are likely to cause premature death either in childhood or young adulthood.

Drugs that lower blood pressure can slow aortic enlargement. Heart valve and aortic surgeries are also effective. Combined, these treatments can add many years to life. Hence the motto of the national Marfan Foundation:

Learn About It
Recognize It
Save a Life

Those with Marfan syndrome often experience other problems, including torn retinas, slippage of the lens in the eye, and spinal problems. The severity of the syndrome may vary widely even in siblings.

About 1 in 5,000 children is born with Marfan syndrome. The syndrome results from variation in the gene that produces a protein that strengthens connective tissues of the body. About 75 percent of the time, Marfan is inherited from a single parent. The trait for Marfan is dominant. Therefore, children born to an affected parent have a 50/50 chance of having the syndrome themselves. One quarter of the time Marfan syndrome results from spontaneous changes in the gene, as neither parent carries the variant. There is no single change in the gene that accounts for most of the syndrome; rather many different variants in the same gene are responsible. The variations in each family are unique to that family, accounting for some of the variability seen from person to person with the syndrome.

The Film

In My Hands documents two meetings of the National Marfan Foundation attended by people with Marfan syndrome, parents and physicians. We meet young children, teenagers and parents, observe annual check-ups, and listen to interviews with researchers. We listen to children talking to other children, parents sharing their experiences, and siblings helping each other.

We live the reality of Marfan's with each family. Adults and children alike share their experience, hopes and fears. Isolation dissolves to community as we watch. Children help other children, parents support each other. The aorta assumes a new, closely observed and powerful identity. Parents, children, and doctors closely monitor the extent of dilatation of the aortic root and openly discuss consequences. We feel the bravery of children as they consent to multiple invasive surgeries. These are not patients; they are people living with the reality of Marfan syndrome.

The focus of In My Hands is a dance workshop for children and teenagers with Marfan syndrome led by Ann Reinking. The workshop took place over three days followed by a performance.

We witness a hesitant beginning as dancers and choreographers begin to learn about each other. It is immediately evident that the children have bodies that lend themselves to beautiful expression through dance. Their arms and legs are exceptionally long and flexible. As the work progresses, we see confidence in each person's ability to dance grow. There is excitement in their realization that their movements are beautiful and graceful, that they can be successful in dance.

It is a privilege to watch Ms Reinking work. We see her understanding of the private struggles of each dancer. We wonder at her recognition of the inherent talents of the dancers. We witness the creation of new movements based on her observations of the dancer's daily activities. We share the excitement she transmits to each child. Each of us should be so lucky as to have her as our instructor.

The final performance is beautiful, moving and elegantly filmed. The dancers in black leotards perform in groups and duets. Clusters of waving arms resemble sea anemones. Professional dancers will envy the graceful extension and form of the duets. The dance, the process, the film are triumph.

Panel Discussion

haseltine_april28_panel_post.jpg

Left to right lower: Ben Carpenter, Ron Lacro, Ann Reinking Upper: Emma Joan Morris, Brenda Siemer Scheider, Richard Murray, Hal Dietz

Ann Reinking

Ann Reinking opened the discussion. She was surprised how well her dancers performed. None had previous dance training. Most did not know one another before the workshops began. Self image was a problem, as those with Marfan look different from their peers. There were only three two-hour training sessions before the performance. Her dancers grew in self confidence and self appreciation. She told them, "If you were a Giacometti, you would be worth $100 million each." The dancers began to improvise themselves and delight in movement. The result was joyous.

Presented by

William Haseltine is a former professor at Harvard Medical School, where he researched cancer and HIV/AIDS. He is the founder of Human Genome Sciences, where he served as chairman and CEO, and the president of the William A Haseltine Foundation for Medical Sciences and the Arts. He lives in Washington, D.C.

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