The ‘Social Butterflies’ support group for Lupus

ST. GEORGE — Few things are as difficult as living with a disease. The Utah Chapter of the Lupus Foundation of America is part of a national force that devotes itself to research about this mysterious disease and provides support to those who suffer from it and their families. St. George had their inaugural meeting in June and continues to provide support to Southern Utah.

Symptoms of Lupus

No one knows exactly what causes Lupus, an autoimmune disease that can damage any part of the body including skin, joints and organs, but symptoms of the disease are diagnosable and it comes in many forms. Some of the basic symptoms include, but are not limited to, fatigue, headaches, anemia, butterfly-shaped rash on the face and nose, hair loss, sun sensitivity, pain, inflammation and damage in various parts of the body. The immune system of an individual with Lupus does not produce proteins to protect the body from foreign invaders like bacteria and viruses and creates auto-antibodies which attacks and destroys the healthy tissue weakening the individual.

One sufferer’s experience

Carmel Matsushita has lived with Lupus for two and one-half decades and attends the local Lupus support group named the “Social Butterflies” – a clever name to address the butterfly shaped rash many suffer from across their face and nose as a result of the disease.

“They are small gatherings,” Matsushita said of the “Social Butterflies” meetings. “We basically use the meeting as a sounding board to collect information like who the best doctors are, what medications have had side effects and what those were. It’s informative to share with newly diagnosed people and those of us who have had it a long time.”

Matsushita said the Lupus Foundation of America provides support groups for people and their friends and family to have a place to gain a sense of community that understands their struggle.

“It’s not fixable,” Matsushita said, “but being in the group makes it manageable.”

Originally from New York City, Matsushita attended sessions at Bridge Health Recovery Center in Hurricane, Utah, many years ago and saw dramatic positive changes in her health. Matsushita instituted some changes with regard to diet and added a more holistic approach to her health. In 2008 she moved to Southern Utah, crediting the dry climate specific to Utah, as well as the clean, less stressful environment, as major factors in improving her overall health.

Matsushita is a mother of two, divorced and was a bi-coastal mother who traveled every 10 weeks to New York to see her children who were 13 and 16 years old at the time she moved to Utah alone. Matsushita had been through every medical intervention possible, including chemotherapy, and found nothing like the Bridge Health Recovery Center and felt it was the only way to save her life.

“Lupus has been a factor in literally every decision I have ever made,” Matsushita said. “There is always a deficit in how much energy and vitality I have available versus how much I need.”

Matsushita said she is always in pain to varying degrees. Her attitude however is one of optimism and positive thinking.

“It is one thing to be in pain, it’s another to be a pain,” Matsushita said. It is a mantra she repeats to herself to avoid being “grumpy” about her condition and to remind her to find things to be grateful for.

One of the greatest challenges Matsushita faced was when her Lupus caused a rare platelet disorder called ITP which required the doctors to remove her spleen. Doctors also discovered that her heart had been affected, and diagnosed her with congestive heart failure. A couple of months later, with a weakening immune system, Matsushita  developed a potentially deadly infection, Necrotizing Fasciitis, commonly known as flesh-eating bacteria.

“At only 44 years old, I was too weak to care for myself at this point,” Matsushita said. “It was even questionable if I would live and so I was moved to a nursing home in St. George to try to regain some strength.”

Weeks later, at the end of November, Matsushita was able to transition back home to Springdale with the help of daily visits from a Certified Nursing Assistant. Now months down the line, with continued support from her family and community the “Social Butterflies,” Matsushita continues to improve “slowly but surely.”

Matsushita gets around with either a walker or power chair. She said the key is to set goals for herself. One of her larger goals is to hike Angel’s Landing June 21, 2014, and she is calling it “A walk with angels” in honor of the friends and family helping her to heal.

Purpose and scope of the foundation

  • To support research and conduct education programs so everyone affected by lupus can have an improved quality of life.
  • To provide information to ensure people with lupus and their families get answers and health professionals know about new means to diagnose and manage the disease.
  • To conduct activities to increase awareness of lupus, rally public support for those who are affected by lupus, and advocate on their behalf.

Resources

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Email: sisaacson@stgnews.com

Twitter: @sarahisaacson1

Copyright St. George News, SaintGeorgeUtah.com LLC, 2013, all rights reserved.

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