12/7/2017 by Share Your Story

IBD: Growing coalition in Massachusetts advocates for patients living with inflammatory bowel disease

Patients in Massachusetts are commending Governor Charlie Baker for recognizing the needs and access challenges facing patients living with inflammatory bowel disease.

For the past eight years, Karen Purvis has struggled to live a normal life “despite horrific symptoms” from inflammatory bowel disease.

“It’s truly a daily struggle,” says Karen, who lives in Franklin, Massachusetts. “I have experienced anxiety, anemia, fatigue, nausea, weight loss, dehydration requiring IV fluids, fevers, and extreme abdominal pain, to name a few.”

In addition to managing her symptoms, Karen must fight a stigma surrounding her diagnosis. Approximately 3 million Americans are living with Inflammatory Bowel Diseases, and nearly all experience challenges from the perception that it’s just a bathroom disease.

“I want people to know that IBD is not just a bathroom disease,” she says. “It affects patients like me every single day. Simple tasks make us feel like we just ran a marathon! We have to become professionals at learning how to hide our pain with a smile. We fight everyday against our own bodies. We are warriors.”

Massachusetts Proclamation: IBD Awareness Week

They’re also warriors in Beacon Hill.

Patients Rising has joined with Karen in supporting a growing coalition in Massachusetts that is helping IBD patients gain access to the care they need and overcome the signficant insurance barriers to accessing the right treatment. The patient-centered campaign recently gained a major boost with Governor Charlie Baker’s proclamation declaring December 1-7, 2017 as IBD Awareness Week in Massachusetts.

inflammatory bowel disease“I have shed many tears that IBD is finally getting much needed attention in Massachusetts,” says Karen, one of the patients that advocated for the resolution. “I want to thank Governor Charlie Baker for issuing this proclamation and standing with patients like me who suffer from Inflammatory Bowel Diseases.”

Advocates say that the proclamation is a step that will help Inflammatory Bowel Disease patients — many of whom are undiagnosed — visit the doctor, obtain the right diagnosis and access treatments to manage the symptoms that compromise their quality of life.

Ulcerative Colitis: “A Debilitating Condition”

Every day, more than 70,000 Americans are diagnosed with an Inflammatory Bowel Disease. Like most IBD patients, Karen was diagnosed before the age of 30 and only after she decided to confront the fear, embarrassment and stigma that comes with an Inflammatory Bowel Disease.

“It has taken me a VERY long time to accept that I have IBD,” Karen says of her diagnosis with a debilitating condition, ulcerative colitis. “I put off treatments, doctor visits, tests, and procedures because this disease is so embarrassing. It brings out my anxiety and fears.”

She adds, “No one talks about it, and that has to change. I want to be a part of that change.”

Karen has found strength through patient advocacy. As part of the Massachusetts IBD coalition, Karen hopes that more and more people will confront their symptoms and get the right treatment.

“IBD is very lonely diagnosis unless you open up,” she says. “Working on this coalition and proclamation has empowered me, inspired me, and introduced me to fellow warriors battling this disease. I am so grateful to be a part of this.”

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