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Belchertown author gives voice to rare illness

  • Christine Molloy at her home in Belchertown Tuesday.JERREY ROBERTS
  • Christine Molloy at her home in Belchertown Tuesday.<br/>JERREY ROBERTS

Living with chronic pain and other crippling symptoms since, the former pediatric nurse is attempting to publish a book to help sufferers of the often misdiagnosed disease.

“Tales from the Dry Side: The Personal Stories behind the Autoimmune Illness Sjögren’s Syndrome,” describes the experience of 13 Sjögren’s sufferers, including Molloy’s own struggle.

To get the book published, Molloy, 42, has been conducting an online fundraiser through kickstarter.com. She needs to raise $7,000 to cover publishing fees with Outskirts Media, a Colorado publishing company that helps self-published authors. As of Wednesday morning Molloy had raised $4,445.

According to the Kickstarter rules, if Molloy does not raise the $7,000 by 5:30 p.m. Aug. 3 — one month after the start of the campaign — all the money raised will be returned to the donors.

Attempt to help others

She believes “Tales from Dry Side” will be a resource for people suffering from the little-understood disease and help those seeking a diagnosis.

“My biggest hope is that someone will read the book and be like, I can identify with this, I’m not alone,” Molloy said in a recent interview.

The book includes a foreword by Steven Taylor, CEO of the Sjögren’s Syndrome Foundation.

In an excerpt from the book published on her blog, www.christinemolloy.com, the author describes her first experiences with the symptoms: “I clearly remember the day it all started,” Molloy writes. “It was the week between Christmas and New Year’s 2008. I tried to get out of bed and all I felt was terrible pain in my ankles and wrists. It was like someone was chiseling through my joints. I had never experienced anything like this pain before and it didn’t make sense because the previous day, I had been fine. I got out of bed and found it difficult even to move my legs. This was only the beginning of my journey. The journey that changed my life forever.”

Over the next year Molloy continued to experience pain, as well as fatigue, dry eyes and difficulty walking and using her hands. The symptoms became so severe that Molloy was forced to leave her job as a registered nurse at Connecticut Children’s Hospital in Hartford and go on disability later in 2008. For the next three years, she struggled to find an explanation for her symptoms.

It was only in 2011, on a visit to her fifth rheumatologist, that Molloy was finally diagnosed with Sjögren’s syndrome.

“I think a lot of general doctors are not familiar with the test for Sjogren’s,” Molloy said.

She hopes that her book will help raise awareness about the malady.

According to the Sjögren’s Syndrome Foundation, Sjögren’s is the second most-common autoimmune disease after rheumatoid arthritis, affecting approximately 4 million people in the United States. Despite the prevalence of the disease, it takes Sjögren’s patients an average of 4.7 years to receive a diagnosis, the foundation’s website says.

Sjögren’s is a chronic autoimmune disease in which a person’s white blood cells attack their moisture-producing glands, such as those that produce tears or saliva.

The hallmark symptoms are dry eyes and mouth, but it can also cause dysfunction in the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and central nervous system. Sjögren’s patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

“I have more limitations now in terms of pain and my energy levels,” Molloy said. “The most obvious difference is I can’t work, so I’m trying to find ways to stay productive.”

There is no cure for Sjogren’s, and standard autoimmune drugs are often only minimally effective, Molloy said. Of all the drugs prescribed for her since her diagnosis, only one, a steroid with debilitating side effects, had any impact. She has had more luck with alternative treatments, such as yoga, nutrition supplements and controlling her diet.

“Low-dose naltrexone has helped a lot,” Molloy said, referring to a drug normally used to help those recovering from drug and alcohol dependence. “I go the Northampton Wellness Center for that.”

Molloy is now in her longest stretch without being hospitalized — since Thanksgiving 2012 — and, despite her limitations, hopes that she will be able to go back to work someday.

“I want to start looking for something part time in the next year,” Molloy said. “I mean, I’m only 42. Some doctors say I’ll never work again ... others are more hopeful.”

In the meantime, Molloy is putting all her energy into fundraising for her book.

She first got the idea for “Tales from the Dry Side” by visiting online support groups for people with Sjögren’s.

“I started crying as I read the stories online,” Molloy said. “I was like, this is my life. The frustration with the lack of diagnosis, with not being able to work. It just felt like there was a need to put some of the stories in one place.”

She began conducting interviews last year. The people featured in her book live all across the United States and Canada. They range in age from 24 to 59, and include 11 women and one man.

When she was finished writing, Molloy pitched the book to 25 publishers. Every one of them rejected it.

“Unfortunately, it appears that there is not an interest in this type of book in traditional mainstream publishing,” Molloy writes on her Kickstarter site. “Meanwhile, these 13 stories remain silent on my computer when they could be making a difference to millions of Sjögren’s sufferers around the world.”

Frustrated, Molloy decided she would publish the book herself. She started her Kickstarter page July 3. Molloy says that most of the people in her “personal circle,” her family and friends, have already donated and she’s now relying on local support to reach her goal.

“If I don’t make $7,000 by Aug. 3, we lose everything for the project,” Molloy said.

Good lord, Outskirts is still charging seven grand? That's ridiculous given the amount of competition out there. If the Kickstarter fails, look into alternative vanity publishers--a number of them are far, far cheaper than that these days. CreateSpace has a reputation for being the lowest-priced of the lot, but there are dozens of companies out there doing it, and I have no idea what a lot of them are charging these days. This is not an exhaustive list by far, but Lulu, iUniverse, AuthorHouse, XLibris, Trafford, Dorrance (though those last two have traditionally been crazy expensive as well), RoseDog, and if the book has any sort of religious bent Tate and Xulon are all options. (I have strongly suspected for a few years Skyhorse Publishing also has a vanity arm, but I do not know this to be a fact.) And that's just the ones I can remember off the top of my head.

Thank you Rachel for a great article and for bringing awareness to this illness. I am impressed with the accuracy of your facts! The link to the Kickstarter campaign is: http://www.kickstarter.com/projects/63135010/publication-of-the-book-tales-from-the-dry-side Chris

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