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COC student fights for Lupus awareness

• Jena Minassian wants people to know more about rare disease.

Posted: April 6, 2008 11:18 p.m.
Updated: June 8, 2008 5:02 a.m.

Saugus resident Jena Minassian stands behind her mother's car. Minassian is one of 1.5 million Americans who suffer from Lupus, a potentially fatal disease that attacks the body's major organs or tissues.

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Most people take for granted taking a stroll down one of Santa Clarita Valley's many paseos or a bike ride through the area's surrounding canyons on a sunny yet mild spring day. Yet for 23-year-old Saugus resident Jena Minassian, sometimes just getting out of bed and walking can be tough.

Minassian is one of 1.5 million Americans who suffer from Lupus, a potentially fatal disease that attacks the body's major organs or tissues. The disease primarily strikes women - according to Minassian, nearly nine of 10 people who suffer from Lupus are female.

However, despite the large number of victims suffering from Lupus, apparently not much has been done to combat the disease.

"Thousands of people die from Lupus each year," said Minassian, who was diagnosed with the disease over two years ago. "Unfortunately, there haven't been any new drugs to treat it in more than 50 years."

An autoimmune disease, Lupus affects more than 180,000 people in California, the largest affected population in the United States. The immune system attacks the body's cells and tissue, which causes inflammation and tissue damage. It strikes mostly minority women of childbearing age. It may damage portions of the skin, joints, heart, lungs, kidneys nervous system and brain. Exposure to the sun can also be damaging to the skin. There is no cure, nor can the disease be diagnosed in one hospital visit. As Minassian pointed out, treating the disease has not kept up with other related diseases or advances in medical technology.

To help stimulate progress in treating Lupus, Minassian took it upon herself to raise awareness - and money - in order to combat the deadly disease. She became an active voice for the Lupus Foundation of America, started her own support group called "Flared Up" and mustered the courage and energy to travel cross-country to Washington, D.C., for Lupus Advocacy Day on March 11.

There, she lobbied the offices of Representatives Howard "Buck" McKeon, R-Santa Clarita, and Nancy Pelosi, D-San Francisco, to co-sponsor the Lupus Reach Amendments, which is currently on the congressional docket. If passed, the proposed legislation will help enhance research and awareness efforts.

Minassian's trip to Washington, D.C., last month was no easy task. It was not long ago when she was unable to walk after undergoing Lupus treatment. During a recent extended hospital visit, Minassian was confined to a bed for treatment and observation. When her visit was complete, she gained more than 60 pounds and was unable to walk - not to mention she was not able to stay outdoors too long during daylight hours.

For Minassian, traveling the nation's capital for Lupus Advocacy Day would require her to exposure her skin to the sun and endure several miles of walking - both very dangerous activities for someone in her condition.

Yet raising awareness for Lupus was so important for Minassian, that she overcame her obstacles and raised enough money to make the trip to meet with congressional leaders.

"It was empowering," she said. "I felt like I needed to do something about this."

Her mother, Terry Minassian, was hesitant to send her daughter on the advocacy trip, yet when she realized how determined her daughter was, she fully supported Jena.

"This meant so much for her," Terry Minassian said. "It took a lot of her, but she accomplished so much." Despite her struggles, Minassian continues to live her life. Currently, she attends classes at College of the Canyons and hopes to transfer to either Moorpark College or California State University, Northridge.

She has also been an active member of the Jaycees, where she won the Brenda Mehling Memorial Award, the organization's highest honor, for actively volunteering with the group despite her illness.

Last November, Minassian also coordinated a Walk For Lupus event in Long Beach.

"I'm really lucky because it isn't affecting my organs," she said, pointing out that many other Lupus victims she met suffered from Lupus spreading to their brain or heart. "I'm very fortunate for that."

She is also fortunate for all those who supported her since she was diagnosed with the disease over two years ago, specifically her family, friends, the Jaycees and Pet Supply, who helped fund Minassian's trip to Washington, D.C.

For anyone who is interested in joining the group of people who are helping Minassian raise awareness for Lupus, please visit her Web site at www.flaredup.org.

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