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Faces of Crohn’sA look back at past Crohn’s Advocates!

the

Volume 7B, 2015 Connect. Educate. Empower.

®

Dear Readers,

It’s hard to believe that six years have passed since we started Crohn’sAdvocate®, and there’s been much progress to help ease the burden of Crohn’s for those who have it over that time.

In this issue, you’ll hear from some voices that are familiar to Crohn’sAdvocate® readers. We caught up with some people we’ve featured in past issues to see what they’re up to now and what’s changed since we last heard from them. You’ll also hear from new voices and learn about new information for the Crohn’s community, including a patient-centered network that is being built by the Crohn’s & Colitis Foundation of America.

All of this ultimately helps show the faces of Crohn’s, as well as the surrounding support system that continues to build. In our last issue, we focused on support systems, including healthcare providers, but for as many areas that we covered, one of our readers mentioned that we forgot a critical part of that support system – the pharmacists. As this reader notes, it is so important for patients to have a strong relationship with their pharmacists so they can help monitor their treatment path. We would like to thank this reader for bringing this to our attention.

And that brings us to something that is important to us. We need YOU! In fact, our next issue will be our first-ever issue solely formed from reader responses. We are looking forward to hearing from you – about your journey with Crohn’s disease, the tips that you’d want others to know and more. Please email us at [email protected] or visit the Crohn’s and Me Facebook page (www.facebook.com/CrohnsAndMe) to learn more.

As always, we love hearing from you.

Be Well,The Crohn’sAdvocate Editorial Board

Submit your Crohn’s experience for a chance to be included in the magazine’s first-ever reader feedback issue! We want to hear from you about your:

Positive personal experiences with Crohn’s disease

Helpful tips for those with Crohn’s

Inspiration to keep motivated

Email us at [email protected] or visit our Facebook page www.facebook.com/CrohnsAndMe to learn more. Don’t forget to include your name,

email address, and phone number, so we may contact you if you’re selected.

Please note: Content submitted by contributors or included from interviews, such as specific disease characteristics, symptoms and food preferences, is specific to those individual contributors or interviewees. Because Crohn’s disease is highly individualized, there will be differences for each person. Talk to your doctor to see what’s best for you.

Want to continue to receive helpful information

on Crohn’s disease and Crohn’sAdvocate® magazine? Sign up at

www.crohnsandme.com.

Now available for iPad®

YOU!

By sending us your submission, you agree to giving UCB and its business partners full rights and permission to edit, copyright, reproduce, own, publish, and use all components of your submission for any commercial or educational use in any media format, including use in all versions of “Crohn’s & Me” and “Crohn’sAdvocate” publications. You also agree to giving UCB and its business partners full rights and permission to use and release your personal health related information included in your submission, including your name, age, diagnosis, and personal story of living with your disease.

Furthermore, by sending us your submission, you represent you are over the age of eighteen (18) years, and agree to be contacted by UCB and/or its business partners for additional details and/or clarification. You also agree to release and discharge UCB and its business partners from any and all claims, actions and demands arising out of or in connection with your submission, including, but not limited to, any and all claims for defamation, libel, slander, invasion of right to privacy, invasion of right of publicity, and copyright infringement.

What’s missing from Crohn’sAdvocate® magazine?

0 2 Crohn’sAdvocate® Volume 7B, 2015

Letter from the Editorial Board

®

TABLE OF CONTENTS

10the faces of Crohn’s

5

4

A look back on past Crohn’s Advocates who have made and continue to make a positive impact on the Crohn’s community.

4

Feature

The Stall Wall featuring comedian Ben Morrison

Crohn’s 101 Educating patients on important basics of Crohn’s disease

The Crohn’s Connection Athlete Vanessa Kabash shares her experiences living with Crohn’s

0 3Crohn’sAdvocate® Volume 7B, 2015

Over the last four years of writing for Crohn’sAdvocate®, I have seen the awareness and subsequent treatment of Crohn’s disease skyrocket. When I first started with this magazine, awareness

on any sort of national level was scant at best. Now, Crohn’s disease and the treatment of it are becoming more mainstream. I see this in no small part because of this publication.

I can attest to this because, as a comedian, people reach out to me. I have had the pleasure of meeting countless patients, advocates, and medical professionals who have randomly emailed me because they were in a doctor’s office somewhere, waiting for some uncomfortable procedure, and saw that there was a magazine all about them. As a

writer, I have been able to address this affliction from almost every possible angle, and, I hope, bring a spotlight to those of us who suffer in silence no more. Through the sheer diversity of people affected I only see one common theme: good people with a bad disease.

So if you’re reading this, it’s your duty to help us continue this mission. You’ve been affected by Crohn’s disease in some way, and I am personally asking you to never shut up about it. I’ve always said this is a disease of the mind as much as it is of the intestine. And let’s face it; the only way to combat ignorance is with open and honest dialogue. Because until the day arrives that we see the cure for Crohn’s disease, it’s our job to take the question mark out of this horrible disease. n

It Never Hurts to

Laugh

It’s Working.

By Ben Morrison

For more exclusive video footage of Ben, download

our iPad® edition at crohnsandme.com

Crohn’s disease celebrity and comedian Ben Morrison (Last Comic Driving, Punk’d) provides a first-person narrative featuring humorous stories and anecdotes about living with Crohn’s from a patient perspective

Creating a Patient-Empowered NetworkAre you a patient looking for an easy way to make a big difference? Become a part of the research process by enrolling in Crohn’s & Colitis Foundation of America (CCFA) Partners – a research network that is changing what it means to be a patient. The CCFA has collaborated with the University of North Carolina School of Medicine to create a research partnership between patients and the scientific community. By simply filling out a survey twice a year, patients can make an important contribution to research and in return, access information and tools to track, better understand and manage their disease, while also helping to shape the research agenda by proposing and voting on research topics. This patient-centered research portal is the first of its kind in the field. Visit ccfapartners.org to sign up today!

crohn’s


The Stall Wall

The Crohn’s Connection

I just focus on my goals instead of just the disease. Athlete Vanessa Kabash shares her story...

Growing up, Vanessa Kabash wasn’t much of an athlete.

“I definitely wasn’t the most coordinated person,” she says, recalling her attempts at being physically active as a child. “Gym class was not my favorite part of the school day.”

But all of that began to change for the now-38-year-old New Jersey native as she got older. “I guess it started with cross country and track in high school, and I continued to run through college and graduate school,” she says. “I started to appreciate how I felt while I was running and it pushed me to do more.”

Charged with her newfound love of sports and all things active, Vanessa enrolled in Taekwondo classes—eventually earning her black belt—and in Aikido, another form of martial arts. She loved the goal-oriented nature of martial arts. There were always new skills to learn and challenges to conquer, and as someone who appreciated identifying and pursuing goals, this greatly appealed to her. “Aikido is also about finding your center and blending with the energy of those around you,” Vanessa says. “And I find these to be helpful guiding principles for life when adapting to any challenge or change.”

At the same time, something else began to change in Vanessa as well. As she entered her first year of teaching in 1999, the random stomach pains and gastrointestinal difficulties she first experienced in college became more difficult for her to ignore.

“In college, my issues were all attributed to stress or just living the college lifestyle,” she says. “But once I began teaching, all of those nagging health worries in the back of my mind became a reality. They were just too severe and happening too often.” The constant bathroom runs and pain management were making teaching problematic.

There were other difficulties too. Soon after being diagnosed with kidney stones, the pain Vanessa managed greatly impacted her performance on the mat at aikido practice.

“There was so much pain that eventually I had to stop. I wasn’t sure if it was from the [kidney] stones or from just being flipped around too much, but the pain was unbearable.”

Vanessa didn’t receive her official Crohn’s diagnosis until January 2010. “I didn’t fully understand the seriousness of what I was hearing

– that it was a disease that I would have for the rest of my life – but I was so glad to have an answer to what I was experiencing. After the years of pain and kidney stones and questions, once all the puzzle pieces finally fit together, I was relieved.”

But throughout all of the pain, the misdiagnoses and looming “what–ifs” she managed daily, sports and physical activity were always a constant and incredible source of inspiration and strength, and a great way to stay strong and healthy while she learned how to manage her diagnoses. She began to find new ways to push herself through the pain and day-to-day uncertainty. After talking with her doctor, she resumed running, going for long distances outside, and eventually incorporated biking and swimming into her weekly routine. This paved the way for 5ks, 10ks, and anything else that could help her test her limits—both physically and as a Crohnie. In the summer of 2009, she completed her first triathlon. An Olympic distance triathlon at Lake George soon followed in 2010. “I always loved a good challenge,” she says, “I just kept looking ahead to the next distance I could take on.”

In the fall of 2014, Vanessa completed her greatest endurance test to date – her first Ironman Triathlon in Chattanooga, Tennessee.

“It was the greatest feeling I’ve ever had,” she says, recounting crossing the finish line.

While crossing the finish line comes with inherent and obvious challenges (whether managing Crohn’s disease or not), at times her disease has made training difficult, especially when it came to meeting necessary caloric requirements for her routine, and often-intense

Continued on page 9

Check out Vanessa’s go-to training playlist &

additional video footage on the iPad version

Please consult your doctor before starting or changing any exercise routine.

0 5Crohn’sAdvocate® Volume 7B, 2015

There are over 100 apps for either Apple or Android that can help you locate a bathroom throughout the U.S.

Apps like BathroomMap, Airpnp and Bathroom Buddy can help alleviate the anxiety of finding a bathroom while travelling in a new environment! Each app contains different features, such as a comprehensive list of toilet locations, reviews on cleanliness and comfort and even a built-in game for entertainment! Added bonus: most of these apps are free!D

id Y

ou K

now

?training schedule. Knowing she had to take in a certain amount of fuel to sustain rigorous training regimens, ensuring the right diet to avoid vitamin deficiency and getting enough calories to help keep the weight on was no easy task. Finding the right diet combination can be tricky for anyone in training – having the added twist of a Crohn’s diagnosis made it more complicated.

Recalling training for the Ironman, Vanessa remarks, “I was managing a flare-up and it was so tough to keep up with the calorie demands. I have memories of choking down chicken dinners just to stay fueled for my workouts.”

Relying heavily on her blender, Vanessa made shakes, or “calorie bombs,” loaded with almond milk, bananas, protein powder and peanut butter to get her through. And she learned little tricks on race day, such as having tolerable snacks on hand and learning ahead of time the kinds of foods that work for her body and what it was experiencing on any particular day. “Anyone going through intense training can and likely will get sick to their stomach,” she says. “I just focus on my goals instead of just the disease.”

Whether training for her next endurance obstacle or involved in day-to-day life, Vanessa has also learned the best way to manage her Crohn’s diagnosis is to just be on top of it. “Not ignoring my symptoms was key for me,” she says. “I found the more I put off what I knew was coming, the worse it was for me.” Now, with the help of her physician, she has a process for acknowledging the onset of a flare-up—including adjusting her treatment, routine exercise, dietary modifications that include limiting fiber, and a trip to her gastroenterologist (along with a standard yearly checkup, including colonoscopies every five years).

She is also very open about her disease, even with her students. As an eighth grade language arts teacher, Vanessa realizes she has the unique ability to reach young people directly and educate them about what having Crohn’s disease means for those managing it every day. And she knows that many of her students are dealing with similar struggles—whether due to stress or more complicated issues—and strives to be a resource for them. She also wants them to see her pushing herself, despite the disease, and invites her students to track her progress online on race days. “It’s nice to show them that they don’t have to feel limited by anything,” she says.

“My students are part of my journey and I want to teach by example and show them that I’m rising to the challenge.”

Teaching and sports aside, Vanessa derives strength from doing other things she loves. She has a very supportive family and enjoys spending time with them as often as she can. She also enjoys playing the piano—something she has done since she was a child. She also enjoys cooking, and, being from New Jersey, heads to the shore whenever possible.

At the end of the day, whether she’s pushing through her latest training regimen, working with her students, or managing the ongoing challenges her diagnosis can bring, it’s all about perseverance for Vanessa. “I realized that living with Crohn’s, like a triathlon, is an endurance event in which you learn to expect the unexpected, develop the ability to persist through pain, nausea, and exhaustion, listen to your body to prevent or address problems, and conquer a challenge one mile at a time,” she says. “My life is all about managing challenges. There’s uncertainty in everything we do. Having a plan, adjusting, moving forward and knowing I can do it – those are the things I choose to focus on.” n

Continued from page 5


Letter from the Editorial Board The Crohn’s Connection

Be sure to download the iPad version of Crohn’sAdvocate® Magazine

www.CrohnsAdvocate.com

Check out behind-the-scenes footage of all our featured advocates by

downloading our iPad® edition at crohnsandme.com

Crohn’sAdvocate® Volume 7B, 20157

Feature

Faces Crohn’s

of the

Reflecting on Six Years of Crohn’s Advocates

Crohn’s Advocates. Though separated by generations, they’re bound by their passion for the cause and their drive to take action. They don’t sit on laurels

of past accomplishments; rather, they seek new paths forward to broaden and deepen their commitment to help others with Crohn’s disease find their individual voice, break free of the stigma surrounding their condition and assert their right to be defined by their lives, not their condition.

Crohn’sAdvocate magazine recently spoke with five people we’ve spotlighted during the past six years to catch up on their continued involvement in supporting the needs of the Crohn’s disease community. Their common refrain: If you have an inflammatory bowel disease, you’re not alone. In fact, you have a strong, supportive community to draw on. But the way the disease affects you is unique, so creating your own path to manage your Crohn’s is important.

Whether it’s creating legislation, improving disease awareness education, strengthening support systems or gathering patients together, the Crohn’s Advocates we spoke with have helped blaze a trail for those just starting their journey with Crohn’s disease.

Crohn’sAdvocate® Volume 7B, 2015 8

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Feature

Driving Legislative ActionAlthough only 25 years old, Ally Bain has been a leading national advocate for people with Crohn’s and other similar medical conditions for more than a decade. Her willingness, at age 14, to share her story with Illinois lawmakers was instrumental in getting the nation’s first Restroom Access Act enacted in 2005. Since then, 15 other states have passed similar laws – the latest being Delaware in August 2014 with action pending in two additional states (Indiana and Virginia).

Although Ally has remained on the forefront of advocating for such Access Acts, she’s also been busy as a second-year law student at Northwestern University School of Law in Chicago. “I’ve grown even more aware of my passions and know that I want to use my law degree to further my interest in securing civil rights for people with disabilities.”

“Vulnerable communities share certain traits,” she notes, adding that they often lack the ability to be heard. “I want to help give them a voice,” she emphasized.

While Ally says she’s encouraged and appreciative that so many states have taken action to enact Restroom Access Acts, she underscores that passage and enforcement of the law are very different. “Enforcement is a bit trickier,” she says. “There needs to be a stronger education initiative with Chambers of Commerce and others to let stores know that this law is in place and to let people who need this law know it is available.” She adds that it’s a challenge that she’s happy to take on along with other Crohn’s disease advocates.

“Everyone has his or her own way of coping with the illness and the lifestyle that comes with it,” Ally notes. Step one, she says, is seeking quality medical care and a strong support system. “People need to know they’re not alone. We’re all in this together,” Ally says. “While their voice can be strong alone, it is stronger with others.”

Broadening Educational Efforts“I don’t want people to become their disease and lose sight of who they are,” says Andrea Meyer, who, along with Megan Starshak, co-founded The Great Bowel Movement online community in 2010 to encourage people to talk more openly about inflammatory bowel

disease. Both women met as college-age counselors at CCFA’s Camp Oasis, but they wanted to do more to foster conversation and to provide day-to-day support.

Since the two women were first featured in Crohn’sAdvocate in 2013, they’ve bolstered the resources available to inform those conversations. The Great Bowel Movement’s blogging team now includes a nutritionist, a doctor and a mental health specialist. “We saw a lot of questions that got repeated in social media, and while anyone can have a voice in social media,” Megan notes,

“it is not always reliable information. You don’t want to give people the wrong information. We need to keep rationality in the conversation.”

But keeping the conversation rational can be difficult. People are often eager to help others and too quick to provide advice and solutions, Andrea says.

“They are doing it from a place of wanting to help, but literally everyone is different. It’s not a cookie cutter disease,” Andrea notes. “I wish people would help other patients through their own journey rather than trying to force their journey on other people.”

Still, both Megan and Andrea are grateful that the conversations about Crohn’s disease are happening, even if they’re not always 100 percent accurate. “It’s not such a taboo topic anymore,” Andrea says.

To extend the reach of those conversations and respond to community wants, Megan and Andrea have now taken a significant next step in the life of The Great Bowel Movement: in-person events and additional offline resources and programs. “An in-person event is where I made my first connection with others like me,” says Andrea. There’s something about an event or in-person support group, she adds, that one can’t get through an online forum. “There’s something very therapeutic about being physically in the same space with someone who can say, ‘I get it.’” As Megan notes: “If you’re able to meet someone else and they can say, ‘I’ve had that happen to

People need to know they’re not alone. We’re all

in this together.

9 Crohn’sAdvocate® Volume 7B, 2015

Feature

me as well,’ it makes you feel like you’re not strange.”

But that strangeness can still rear its head in the workplace and at schools. “The corporate environment isn’t always welcoming,” Andrea says, even though she underscores that her employer has been wonderful.

“When I first started here, I was very open that I had this disease and that I would have bad days and good days. Everyone knew it.”

But, she acknowledges, employer education about IBD is a hot topic and major unmet need, and The Great Bowel Movement, after taking into account the importance of patient privacy, works to get information to school nurses, counselors and teachers. “That way they are more likely to take the students seriously, and not have an opportunity to wonder if they are making something up,” Andrea says.

Regardless of whether the conversations take place online or in-person, both Megan and Andrea emphasize the importance of having a conversation. “Nothing else happens unless the conversation begins,” Andrea says. And for now, they’re both focused on building momentum with The Great Bowel Movement even as they hold down full-time jobs.

“The hope is that we create an awareness-army of people at all different points along their journey with this disease,” Andrea says. She adds that she wants everyone to feel equipped to handle their disease and to be comfortable talking about it. “One woman at a recent event told me she’d never spoken to anyone except her doctor and her husband about her disease,” Andrea adds.

“That blew my mind. She is a perfect example of our target audience. That is where it all starts – having that first conversation.”

Building Family and Community SupportsDespite serving as an active Crohn’s advocate and educator in Georgia for years, nothing had prepared Theresa Holzknecht for being the parent of an IBD patient. She took the news of her son’s IBD diagnosis hard, worrying that he would have to lead a similar life as hers.

But her friends, family and Crohn’s community support system reminded her to look at the situation differently. “When I started telling people,” she says, “I had so many positive responses suggesting what a blessing it is that my son has a mom like me who knows what to look for and how to help him.”

Theresa’s eldest son, Jackson, offered his mother comfort when she told him about the diagnosis of Charley,

Crohn’sAdvocate® Volume 7B, 2015 1 0

his younger brother. She spoke openly to them about how it felt growing up with Crohn’s since she was diagnosed in 1994 and that she still felt guilty

when she couldn’t do things for the family because of the disease. “But you can’t help it,” her oldest son told her. “That really made an impact,”

Theresa recalls. “Help what you can; for what you can’t help, you need to let it go.”

Still, to help smooth that path for her son, Theresa, a former school art teacher, spent time at Charley’s school to educate

staff about what’s going on with him, saying, “They’re very supportive.”

But as Theresa knows all too well, such support is frequently not available to those with inflammatory

bowel diseases. “The harsh reality is that so many people think they are alone and that nobody

understands,” she says. “Nobody really wants to talk about it because a lot of it is unpleasant. But talking about

the emotional part of IBD alone can help you find that people have a lot in common.”

As much as people have in common, however, Theresa is also quick to point out that “the way this disease affects you may

be different from the way it affects me. It’s not a one-size-fits- all response.”

And she encourages people to speak up about their disease, even with employers, and the particular way that it affects them. “Tell your

employer: ‘We all have issues, and some of mine are hidden, but I need to tell you about them. It will make me work harder because I’ve had to work

harder my whole life. I am a good worker; I don’t want you to mistake my physical pain for laziness.’”

In short, Theresa says, be up front. “Sharing information about my disease makes me feel more empowered. Don’t be ashamed.”

Fueling the Patient RevolutionAt its heart, what drives 52-year-old Crohn’s advocate, healthcare multimedia journalist and blogger Michael Weiss is a desire to share information. “It doesn’t matter whether one person reads the blog or a million read it,” he says. “I believe it’s my responsibility and my purpose in life to help people with this disease to get treated with respect and dignity.”

Crohn’s can really throw you for a loop…

and that’s OK!

As with many chronic illnesses, Crohn’s disease doesn’t just take a physical toll. It can affect us

emotionally as well. The unpredictability of flare-ups, changes in body image, or needing to miss activities can lead to

a full gamut of emotions.

The hope is that we create an awareness-army of people at all different levels in their journey

with this disease.


Feature

States Expanding Immediate Access to RestroomsSince Illinois became the first state to enact a Restroom Access Act in 2005, 15 other states have followed suit. The legislation, frequently referred to as Ally’s Law after Ally Bain, is a state-by-state decision. Federal action on a national measure has stalled. The state legislation generally requires retail establishments with employee toilet facilities to allow customers to use those facilities if the customer suffers from an inflammatory bowel disease or other medical condition requiring immediate access to a toilet. States having enacted a Restroom Access Law include:

• Colorado

• Connecticut

• Delaware

• Illinois

• Kentucky

• Maine

• Maryland

• Massachusetts

• Michigan

• Minnesota

• Ohio

• Oregon

• Tennessee

• Texas

• Washington

• Wisconsin

There’s no question it is always important to check with your doctor before taking advice found on the Internet. But, Michael notes he’s part of a grassroots movement powered by technology. “It’s like a patient revolution, offering the opportunity to make us much better educated and empowered. I really believe it could change healthcare.”

And that revolution is picking up steam. “Since 2012, people are much more candid on social media,” he says. “They’re willing to go online and share their most intimate details.” For him, the impact of that change is “a proliferation of healthcare social media such that patients can go to their doctor armed with the knowledge and experience of thousands of similar patients, and that has transformed the doctor-patient relationship into more of a respectful collaboration.”

Michael is not new to sharing details of his 30-year battle with Crohn’s – he wrote a book in 2001 on the topic and later started a website. And he’s not hesitant about pushing harder and more publicly for medical professionals and the healthcare community to do more to help those with inflammatory bowel diseases.

Michael sees himself providing an educated patient perspective on Crohn’s and IBD, and he says he’s eager for patients to do more to help the medical and research

community. “When people see someone else had this symptom and it can be treated, they’re more apt to share information. And researchers need the patient information, the patient records.” He says many patients know more about their specific case of the disease than do their doctors who must treat a possibly infinite number of variations of the same IBD.

Michael also wants patients to use their experience to help others. To that end, in February 2013, he launched the “Crohn’s disease Warrior Patrol” whose mission is to match Crohn’s patient warriors with local hospitalized or new patients. By doing so, Michael says he wants current warriors to provide hospitalized patients with “comfort, experience, personal stories, a hug, a smile, a laugh and an overall cheerful hospital or Skype/telephone visit to let them know we are in the fight TOGETHER.”

Together, using social media and in-person engagements, Michael says it’s time to move the conversation beyond being “a bathroom disease.” As he points out, “Part of the challenge is that we need to expand awareness of the emotional, physical, and social impact of this disease on individuals in their home, at work and in their communities.” n

Crohn’sAdvocate® Volume 7B, 2015 1 2

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Crohn’sAdvocate® and Crohn’s & Me® are registered trademarks of the UCB Group of Companies.

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Connecting with patients�“There’s a mental aspect to sports and a mental aspect to dealing with Crohn’s disease. You have to stay positive and you can’t focus on the illness. You have to focus on living your life.”

Carrie, living with Crohn’s disease

UCB has a passionate, long-term commitment to help patients and families living with severe diseases lead normal, everyday lives.

Our ambition is to o� er them innovative new medicines and ground-breaking solutions in two main therapeutic areas: neurology and immunology. We foster cutting-edge scientifi c research that is guided by patients’ needs.

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