There’s Always HOPE

By Anonymous

“Each piece of art allows you to discover the patient’s personal health histories and the courage necessary to cope with the healing process.” THE AIM OF the exhibition Expression of Hope” is to honor each person living with a lysosomal storage disorder (LSD) and provide creative perspectives that inspire new ideas and renewed energy in fighting genetic disease. Numerous patient organizations from around the world encouraged their members to submit images that share their feelings of hope and explore the realities, perceptions, and experiences of living with an LSD. Building on the concept from the “… therefore I am” program launched by the German MPS (Mucopolysaccharidosis) Society, the exhibit explores some of the differences and similarities between how someone living with an LSD views the world and how the world may view the person.

Lysosomal storage disorders are a group of roughly 50 genetic (inherited) diseases, sharing common clinical and biochemical characteristics. People with LSDs either are lacking, or in short supply of, particular enzymes that are found in the lysosome (a compartment of the cell) that contains various digestive enzymes as well as acidic materials. Because of this, molecules that are meant to be broken down by the missing enzymes build up within the lysosome and can prevent the cell from working properly. Most LSDs are progressive and life threatening.

In partnership with the National Gaucher Foundation, an additional three pieces of art by Ted Meyer, including a scar mono- print, will be on display with Expression of Hope” at the National Museum of Health and Medicine. Meyer’s previous exhibition at the museum, “Scarred for Life,” featured 36 mono-prints of scars, accentuated with gouache (opaque watercolor paint) and color pencil. Meyer feels that a scar is not just a marker of a disability, but rather part of what makes someone physically and emotionally unique. “Scars can mark entering into or out of a disability, going from cancer to health, from limited mobility to full movement. They freeze a moment in time, a car accident or gun shot”

Born in New Rochelle, N.Y., Meyer frequently was in the hospital as a child due to Gaucher disease, a rare genetic disorder that causes pain and deterioration of the joints and organs. Gaucher disease is one of the approximately 50 LSDs. According to the National Gaucher Foundation, to date, more than 200 genetic mutations known to cause Gaucher have been identified. Gaucher is pan-ethnic; the incidence rate is relatively high (as many as one in 450 people) in the Ashkenazi Jewish population (Central, Eastern, and Northern descent), with a carrier frequency of one in 12 to 15. The carrier rate for the mutations that cause Gaucher disease is approximately one in 200 in the general population, with an incidence rate of one in 50,000.

Much of Meyer’s early artwork dealt with his illness but, as he became healthier, his pieces had less to do with his own physical condition and came to highlight others. Meyer became aware of how scars can mark a turning point in peoples’ lives; sometimes for good, but often otherwise. Similar to the pieces of artwork featured in “Expression of Hope,” each scar comes with a story.

“Each artist’s ability to create a beautiful image as a remarkable reflection of [his or her] own experiences as an LSD patient, or as an outside observer of someone suffering from LSD, is fascinating,” notes Adrianne Noe, director of NMHM. “Each piece of art allows you to discover the patient’s personal health histories and the courage necessary to cope with the healing process. Together, these artists have identified a unifying theme which is truly unique-an appropriate exhibition for a museum that links healing to art.”

The National Museum of Health and Medicine was established in 1862 when Brig. Gen. William Alexander Hammond, the U.S. Army Surgeon General, issued orders that directed Union Army medical officers “to collect, and to forward to the office of the Surgeon General all specimens of morbid anatomy, surgical or medical, which may be regarded as valuable; together with projectiles and foreign bodies removed, and such other matters as may prove of interest in the study of military medicine or surgery.”

The museum’s first curator, John Brinton, visited mid-Atlantic battlefields and solicited contributions from doctors throughout the Union Army. During and after the war, museum staff took pictures of wounded soldiers showing effects of gunshot wounds as well as results of amputations and other procedures. The information collected was compiled into six volumes of The Medical and Surgical History of the War of the Rebellion, published between 1870-83.

During the late 19th and early 20th centuries, museum staff engaged in various types of medical research. They pioneered photomicrographic techniques, established a library and cataloging system that later formed the basis for the National Library of Medicine, and led the museum into research on infectious diseases, while discovering the cause of yellow fever. They contributed to research on vaccinations for typhoid fever and, during World War I, the museum staff was involved in vaccinations and health education campaigns, including major efforts to combat sexually-transmissible diseases.

By World War I, research at the museum focused increasingly on pathology; in 1946, it became a division of the new Army Institute of Pathology, which became the Armed Forces Institute of Pathology (AFIP) in 1949. The museum’s library and part of its archives were transferred to the National Library of Medicine when it was created in 1956. The Army Medical Museum became the Medical Museum of the AFIP in 1949, the Armed Forces Medical Museum in 1974, and the National Museum of Health and Medicine in 1989.

The museum houses five collections: The Human Development Anatomy Center, Otis Historical Archives, and the Anatomical, Historical, and Neuroanatomical collections. These represent archival materials, anatomical and pathological specimens, medical instruments and artifacts, and microscope slide-based medical research.

The museum’s more than 24,000,000 specimens and artifacts were the first in the country to be registered by the Department of the Interior as a National Historic Landmark, and it is the only museum collection in Washington, D.C., with this status. The secretary of the Interior, who has designated less than 2,500 districts, sites, buildings, and structures for listing in the National Register, selected the museum’s collection because of its “exceptional value in commemorating and illustrating the history of the United States.”

Today, the museum is an element of the Armed Forces Institute of Pathology, a tri-service Army, Navy, and Ak Force agency of the Department of Defense with a threefold mission of consultation, education, and research.

“Expression of Hope” is on view through March 2 at the National Museum of Health and Medicine, Washington, D.C. The artwork then will be housed permanently at the Allston Landing Manufacturing facility of Genzyme-the biotechnology company is the major sponsor of this exhibition-in Boston, Mass., when the expansion of that plant is completed in 2009.

Copyright Society for Advancement of Education Mar 2008

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