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Minassian takes it day by day

Profile: Saugus resident Jena Minassian becomes the new face of the 2012 SCV Arthritis Walk

Posted: March 2, 2012 1:55 a.m.
Updated: March 2, 2012 1:55 a.m.

Nearly 2,500 participants start the 2011 Arthritis Walk held at Six Flags Magic Mountain.

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At a recent lupus wellness event in Los Angeles, a man approached Jena Minassian and told her she didn’t look like she had lupus.

The 26-year-old Saugus resident, who has for years battled with lupus and its relatives, rheumatoid arthritis, fibromyalgia and chronic fatigue, responded, “What does lupus look like?” The man had no answer.

Lupus — a chronic disease due to an overactive immune system — has  become more recognizable to the public thanks to storylines in the FOX-TV show “House” and “America’s Next Top Model” reality television show contestant Mercedes Yvette Scelba-Shorte, who became a spokesperson for the Lupus Foundation of America.

But the disease, with few outward symptoms, is not obvious to a stranger or even friend.

While most of the 1.5 million-plus Americans with lupus or arthritis and 10 million with fibromyalgia are women within childbearing age, the conditions also affect men, the elderly and toddlers.

“There’s no face to lupus or arthritis,” Minassian said.

This year, Minassian will become the face of the 2012 Arthritis Walk, which will be held at Six Flags Magic Mountain in Valencia on June 3.

The annual honor is typically given to a child, but Minassian was recognized for her efforts in starting the first Santa Clarita Valley support group for lupus, arthritis and fibromyalgia as well as her deep community involvement, despite the ravages of diseases that can leave her bedridden for days.

“I’m very happy that she has been chosen,” said Stacey Howe, a Canyon Country resident who attends the local support group and is on the Arthritis Walk’s planning committee.

“I think that people need to see that a young adult is also affected by this and how much it’s affected her life and her family,” Howe said.

Minassian was first diagnosed with lupus at age 19 after getting blood tests performed to see why her hair was falling out in the shower.

She learned that her immune system couldn’t tell the difference between healthy and bad tissue and was attacking both, causing pain and inflammation in her body.

Later on she would also be diagnosed with rheumatoid arthritis, fibromyalgia and chronic fatigue.

But it wasn’t until she was 22 that she started getting sick, eventually winding up in the hospital for two weeks after a Caribbean cruise triggered pain and fatigue. And the ongoing battle hasn’t stopped.

Minassian undergoes chemotherapy and takes 25 different medications a day to control the pain and fatigue.

At 5 feet 8 inches tall, her treatments have made her weight fluctuate from 200 pounds down to 105 pounds. 

She is unable to work and often has to cancel plans because intense pain or fatigue has set in.

Minassian recalled one time when she was grocery shopping and halfway through she had to sit down in an aisle due to fatigue.

She called her roommate to finish the shopping and take her home.

“You take it day to day, even hour to hour,” she said.

She participated in the Arthritis Walk for the first time in 2007, and inquired at the event about support groups in the SCV area.

There were none.

By the time she participated in her second walk, in 2011, she was surprised to learn there still wasn’t anything in the community for the chronic diseases she had.

So, in June 2011, she led the first SCV support group meeting for lupus, arthritis and fibromyalgia.

People quickly heard about the support group through doctors, meetup.com and word of mouth.

By the second meeting, the attendance was so large that the support group took up an entire Starbucks.

“I didn’t realize how big the need was until I kept getting those calls,” she said.

Minassian said her goal is to create a more positive support group and tries to steer clear of talking about things they can’t control, like future cures.

There hasn’t been a new drug for lupus in 50 years, she said.

Howe said the support group has been helpful for members.

“As much as my family thinks they get it, they don’t,” Howe said. “It’s nice to be able to compare notes and just talk about how things are going with people who understand.”

At the most recent meeting on Feb. 26, Minassian led the group in a discussion on getting the most out of your doctor visits, occasionally pulling out relevant handouts from a huge briefcase she has filled with resources on chronic diseases.

Most of the attendees — nearly all women — are older than Minassian, and they asked her to start discussions on food allergies, dealing with fatigue and how to handle rude comments from people about their fluctuating weight (chronic pain medication can cause extreme weight loss or gain).

“Some of the older people may not have the contacts that (Minassian) has and the resources to get this information,” Howe said. “She’s doing a really good job with keeping everyone up to date on what’s current.”

To continue learning about the diseases, Minassian seeks out conferences and events.

Minassian recently learned she was selected to receive a full scholarship to go to the Arthritis Foundation Advocacy Summit, to be held in April in Washington, D.C.

The trip itself is just another illustration of dealing with multiple chronic diseases, she explained at the Sunday meeting.

The traveling itself might cause fatigue, which would affect her schedule while in D.C.

Plus she has to plan ahead to ensure she properly packs her 25 medications.

In her roles as the Arthritis Walk honoree and a summit scholarship recipient, Minassian doesn’t want to “sugarcoat” the diseases.

Ultimately, she wants to create a support system for those in the SCV dealing with the same diseases and to educate others on why sometimes she has to cancel plans or why a seemingly healthy-looking 26-year-old parks in a handicap spot.

“You can ignore or yell or educate,” she said. “I choose to educate.”

Minassian said the next meeting for the SCV Arthritis, Lupus & Fibromyalgia Support Group will be held 2 p.m. to 4 p.m. Sunday, March 25 at the American Legion Post 507, located at 24527 Spruce St., Newhall.

“Our support group meetings are always on the fourth Sunday of the month at 2 p.m. at The American Legion,” said Minassian. “All of our support group meetings and events can be found on the support group’s website calendar at: www.meetup.com/SCV-ChronicPain-Support.

Arthritis Walk 2012 will be held June 3 at Six Flags Magic Mountain. Register at www.mmarthritiswalk.org.  Teams and donations are currently being sought for the annual Arthritis Walk to benefit the Arthritis Foundation.

smitchell@the-signal.com

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