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Auction to benefit those with rare lung disease

ESTACADA NEWS PHOTO: EMILY LINDSTRAND - Carrie DeRosia stands next to a chair she decorated for the Chairs for Charity event at Wade Creek House. DeRosia, the driving force behind the event, has a rare lung disease called lymphangioleiomyomatosis.When Carrie DeRosia was in the eighth grade, she passed out while running around her school’s track during the annual field day.

For most of her life, DeRosia has experienced fatigue, chronic pain and shortness of breath, but it wasn’t until 2006 that she received a diagnosis that explained these symptoms. After being hospitalized for a collapsed lung, DeRosia was diagnosed with Lymphangioleiomyomatosis, or Lam, a rare and progressive lung disease.

The diagnosis eventually inspired her to organize the W

ade Creek House’s annual Chairs for Charity event, which is scheduled for June 4.

Lungs like Swiss cheese

Patients with Lam have an excess secretion of smooth muscle tissue, which invades the lungs and causes the destruction of healthy tissue. DeRosia noted that Lam patients’ lungs often look like Swiss cheese because of the tissue destruction.

The disease affects women almost exclusively, and there are less than 2,000 diagnoses in the U.S., though scientists believes women with Lam are often undiagnosed or misdiagnosed.

DeRosia said she was a “rollercoaster of emotions” when she first received her diagnosis.

“You feel mad, you feel denial, you feel sad,” she said. “Sometimes you feel bulletproof.”

DeRosia travels to the National Institute of Health in Bethesda, Md., every year for a government-sponsored study.

“They’re studying patients for common denominators, because we’re so rare,” she said.

Sue Sherman, executive director of the Lam Foundation, an Ohio-based group dedicated to research and patient advocacy, compared the disease to a slow-moving cancer. Rather than cancerous cells, excess muscle tissue is produced.

“Something flips a switch, and those muscle cells are created,” Sherman explained.

She noted that the cells don’t originate in the lungs. Instead, researchers suspect they are created in the uterus, ovaries or kidneys.

“They travel through the lymphatic system and end up inside of the lungs,” she said.

The disease obstructs the body’s airflow and limits the delivery of oxygen.

“Since the secretion is destroying the lung tissue, it makes it difficult to breathe,” Sherman said. “If it occurs near the edge of the tissue, it can cause a collapsed lung.”

Additional symptoms of Lam include chest pain, frequent coughing, wheezing and fatigue. Currently, there is no cure for Lam. In advanced cases, a lung transplant can add several years to patients’ lives. Often, patients will eventually require oxygen therapy.

Sherman is optimistic about treatment for of the disease moving forward.

In May 2015, the drug rapamune, typically used to prevent organ rejection after kidney transplants, was approved by the Food and Drug Administration as a treatment for Lam. A study found that Lam patients treated with rapamune for a year began to experience more stable lung function while on the medication.

“It holds the disease at bay for a lot of women,” Sherman said. “In the 20 years since the Lam Foundation was created, we’ve gone from a prognosis of having 5-7 years of life or a lung transplant to having an FDA-approved treatment that extends life.”

Creating Chairs for Charity

DeRosia started the Chairs for Charity fundraiser in 2013 as a way of helping herself and other Lam patients.

“I wanted to be productive,” she said. “It’s easy to feel sorry for yourself, but I knew I couldn’t keep doing that.”

Typically, the fundraiser brings in around $2,000, all of which goes to the Lam Foundation. The foundation uses the money to fund research and support patients.

“A lot of the money we make comes from things like Chairs for Charity,” Sherman said. “A lot of our funding comes from patients and their families doing what they love.”

This year’s Chairs for Charity auction will take place on June 4 at the Wade Creek House, 664 N.W. Wade St. There is a variety of chairs to bid on, ranging from a children’s chair painted blue with Elsa from the movie “Frozen” on it, to a kitchen table chair decorated with Dr. Seuss characters and his famous phrase, “Oh, the places you’ll go.”

DeRosia, who decorates furniture, donated an armchair decorated with a birdhouse on the back and old book spines on the seat.

Tiny, decorative chairs are also available for $10.

For DeRosia, equally important is the awareness that the event raises. Every year, she creates pamphlets about the condition and answers questions people have about Lam.

“Easy to feel alone” without community

Since leaving her job due to illness in 2010, DeRosia has kept busy in other ways. She enjoys gardening, camping and painting furniture and has been a member of the Wade Creek House since 2010.

She’s also a member of a Facebook group for Lam patients in the U.S. and Canada, which she says has been helpful.

“The Facebook group is a godsend,” she said. “We understand what we’re going through, so we can be supportive of one another. It’s easy to feel alone because it’s such a rare disease.”

She also enjoys her work at the Wade Creek House. The house and barn have space for up to 19 vendors and artists, all of whom attend monthly meetings and work at the store several times per month.

“The girls (at Wade Creek House) are supportive every year,” DeRosia said. “Almost all of them usually donate chairs. It’s really good seeing people’s generosity.”

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