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Never judge a book by its cover - The Star Democrat - Easton, Maryland: Home

Never judge a book by its cover

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Posted: Friday, June 11, 2010 1:00 am

EASTON Imagine having a pounding headache for days. Now, imagine having it for years, and that being the least of your problems. Meet Patricia Murray, a 52-year-old former model. On the outside, she is an attractive, tall and slender woman with a beautiful smile. On the inside, her body is fighting a constant battle.

Murray has Mastocytosis (also known as Mast Cell Disease), Elhers Danslo Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS), as well as complications and other maladies including tremors, allergic asthma and a blood clotting disorder.

"These maladies are something else," said Murray, an Easton resident. "You don't know what to expect every day. When you wake up, you just thank God that you woke up."

Although she is left mostly bedridden, hooked up to an oxygen tank while wearing various braces for her legs, neck and back, many are surprised not only by her looks but also her extreme optimism. Of her 13 medications, Murray does not take anti-depressants, and neither does her son, Dustin Wood, who suffers from EDS, POTS, and Chronic Fatigue Syndrome.

"Every person is different," she said. "My son has seizures and I don't. He doesn't have Mast Cell Disease but he has chronic fatigue."

Instead of letting these maladies get them down, the mother and son duo use music and laughter to raise their spirits.

"I love all music," she said. "Laughter is a natural seratonin."

They use laughter instead of pain medication.

"My maladies affect me head to toe and it's very painful," she said. "My pain level is right now at a 10 but I don't take any pain meds at this time. I'm doing this cold turkey."

Her son is equally optimistic.

"No matter how sick you are, there's always a way to smile about it," said Wood, who is a stand up comedian.

Murray was born in 1958, near Charleston, W.Va. and graduated from South Charleston High School.

"I got a scholarship to a college in Georgia but my father wouldn't let me go," she said. "So instead I got married."

As a child, Murray had various health issues, including problems with her bladder and heart rate, as well as vomiting and chronic pain.

"I always had medical issues, so I don't know what normal is," she said. "I went to the school of hard knocks. I had to adjust my lifestyle to how my health was doing."

Murray has been emoloyed but it was mostly short-lived because of her medical issues. In the early 1990s, she offered a personal chef service and has written food columns for various publications over the years. She also published a cookbook, "Happiness is Cooking," that she plans to sell.

"I have no formal training but you can start anything if you put your mind to it," she said.

Murray's health took a turn for the worse in 2003 after a bad fall. After multiple diagnoses, doctors finally realized it was EDS.

"Often what happens is that people are going along and they are managing and they are having mild affects, and there is some event that takes place," said Dr. Clair Francomano, a geneticist and researcher who works with Murray. "In Patricia's case, she had a fall and a hip dislocation. Things seemed to get much worse after that acute event."

Francomano described EDS as a hereditary disorder of connective tissue and said Murray has neurosurgical complications. Basically, Murray's collagen is depleted collagen keeps tissues from becoming deformed and that affects her organs and also causes her joints to dislocate easily and her skin to be elastic, as well as other complications. There is no cure.

"My role is to recognize the constellation of symptoms," said Francomano, who works for the Greater Baltimore Medical Center. "There are specific medical approaches to try to steer patients in the right direction. In Patricia's case, I got her to Doctor Henderson, who is a neurosurgeon."

Although EDS has been recognized for years, the connection between EDS and the nervous system and neurological symptoms has been recognized only recently.

"Just to have someone who recognizes this as a valid medical diagnosis and that there is really something going on can be tremendously helpful to the patient," said Francomano, who sees around five new patients and five old patients a week with EDS. "(Murray) is unusual in several different ways. She has more profound affects on her life than most people who have this disorder and she's an amazingly positive woman."

Francomano believes there is a great need for more research.

"It's very important to spread awareness," she said. "We've made great strides in the last couple of years in understanding the neurological approach to some of these issues but we have a long way to go.

"It's very important to understand that this condition can cause multiple different manifestations in multiple different organs. If we can get the word out that there is this thing out there, that these parents aren't making this up, then people and doctors will realize that it's a real thing and it's devastating to these families and the children who are affected."

Murray and her son are also working to spread the word. In 2007, Murray set up two contests through MySpace called "Tour America Concerts for Awareness," as a way to spread the word about Mast Cell Disease, EDS, POTS, and also as a way for musicians to get noticed. One of the musicians was Jimmy Greenspoon of the band Three Dog Night.

"It's not very often that somebody with such a debilitating disease can be so graceful and full of life in the face of this awful thing," said Greenspoon. "Her grace and charm throughout the benefit and this past year should be an example for everything. She's one of the most amazing people I've ever met."

Murray is working with Greenspoon, and others, to start the Murray Woods Foundation.

"We want to help patients and set up support groups around the country," she said. "God's blessed me to learn about these things so I can help others with my Foundation."

Murray hopes to provide one-on-one help, raisie awareness and promote research.

The Foundation should be up and running soon, as well as her shop at The Amish Market in Easton.

"The shop is to help pay for our care," she said.

At her shop, The Elegant Swan Fine Antiques & Collectibles, Murray will sell her antique collection to help pay for healthcare, as well as support charities. In addition, her son plans to perform his stand up comedy routine at The Amish Market.

"It's astronomical the amounts we have to pay for healthcare," Murray said. "It will help me and I want to help others too. I don't want hand-outs from anyone. I wanted to keep these (antiques) but unfortunately I can't. If I have to sell my antiques, then so be it, at least I am blessed to have something to sell."

Her biggest goal is to raise awareness.

"Just Google our disorders," she said. "If one person tells another person, that's raising awareness."

For more information, send an e-mail to txbriteeyes1yahoo.com or visit www.mypsace.com/patriciamastoanded.

"God said you can't come (to Heaven) yet, you talk too much," Murray said. "And I have too much work to do down here."

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