ImproveCareNow Ibd


Before I Was Diagnosed

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie


 

Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.


Last year I made an animated film about my diagnosis with Crohn's disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Josh Weisbrod is an animator and comic artist. This is his comic illustrating the time before he was diagnosed with Crohn's disease.


A Healthy Meal Plan for IBD

In 2014, a question came to the ImproveCareNow Registered Dietitian (RD) group about how to choose foods that can promote healthy weight loss and control hunger without causing a flare of gastrointestinal (GI) symptoms. By answering questions from our community, the RD group aims to provide valuable tools and information for patients and families to better understand the role of nutrition in managing Inflammatory Bowel Disease (IBD). The RD group encourages partnerships between patients and their care teams, including dietitians, so together they can design a dietary plan to avoid food-related complications from IBD and promote healthy weight maintenance.


Vitamin D and Inflammatory Bowel Disease

[Editor’s Note: This article was originally published in CIRCLE January 2012]

Kids with Crohn's disease and ulcerative colitis often have low levels of vitamin D. How does that happen? When you are not feeling well, you don't eat as well. If you don't eat foods supplemented with vitamin D, it could lead to a vitamin D deficiency. You put sun screen on to prevent skin cancer (a good thing to do), but sun screen also blocks the ultraviolet rays that stimulate your body to make vitamin D. Some patients with Crohn's disease have inflammation in the part of the intestine that absorbs vitamin D into the body, so some of the vitamin D eaten goes right through without being absorbed.

Vitamin D is important for bone growth, bone density and bone strength, and for growth itself. So getting enough vitamin D is especially important for growing kids.   Vitamin D also appears to have other health benefits.

How much is enough vitamin D? Recently recommendations have changed-more vitamin D is recommended now than before: 600 units a day (instead of 400) for kids 1 to 18 years old. For patients with Crohn's disease or ulcerative colitis, sometimes more may be necessary, such as 800 or 1,000 or more units per day. (Caution: excessive intake of vitamin D can be harmful.) Ask your clinician or dietician what the right amount is for you.

How do you get enough vitamin D? A daily multivitamin supplement usually has 400 units per tablet so that's a good place to start. Vitamin D tablets are also available. Milk and yogurt are fortified with vitamin D, usually about 100 units per serving. Some orange juice is fortified with vitamin D.

To absorb vitamin D into your body, it has to be bound to some fat. So when you take your vitamin D supplement (including skim milk or non-fat yogurt) be sure to eat food with fat at the same time, for example, at least 2 or 3 teaspoons of peanut butter, or margarine or oil.

No bones about it! Get your daily vitamin D. For more information click here.

Richard Colletti, MD
Network Director, ImproveCareNow


Enteral Therapy as a treatment for Crohn's disease


[Editor's note: This article was originally published in CIRCLE May-June 2013]


Enteral therapy refers to providing nutrition as a formula rather than by eating a regular diet. Enteral therapy has been shown to be effective in inducing, and perhaps maintaining, remission for pediatric patients with Crohn's disease. Enteral therapy does not have the side effects seen with drug treatment, and can improve growth, unlike corticosteroids, which have many known side effects. Although used very little in the United States, enteral therapy is commonly used abroad, including many European countries and Japan.


Over the years, several methods of administering enteral therapy have been evaluated, leading to variation in treatment. In 2012, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) formed the Enteral Nutrition Working Group to review the use of enteral nutrition therapy in pediatric Crohn's disease, which summarized previous research and offered recommendations for physicians.


Drinking FormulaHistorically, enteral therapy was given through a feeding tube, and this is still done at many centers. However, drinking the formula is also an effective option. Studies have used both specialized nutrition formulas (in which the protein has been broken down to into smaller pieces) and non-prescription over-the-counter formulas (in which protein is not broken down). Both approaches appear to be equally effective, an important finding since over-the-counter formulas taste better and are less expensive.


The majority of the research has shown that enteral therapy is effective when taken as the sole source of nutrition (that means the patient can't eat any food), and this approach was recommended by the NASPGHAN Enteral Nutrition Working Group. However, recently a study published by Children's Hospital of Philadelphia showed that enteral therapy protocol is still effective when a small amount of food (less than 20% of the calories) is taken at the same time.


The way enteral therapy works is unclear. Theories include that it may help to provide the body with important nutrients and better overall nutrition, eliminate an unknown dietary substance that causes an immune response, or alter the bacteria found in the intestines.


A perceived barrier to enteral therapy is that the treatment may be demanding for physicians, families, and patients. For example it may be difficult to start, expensive, create a need for a feeding tube, or be displeasing to patients. Nationwide Children's Hospital is developing and testing a simple enteral therapy protocol which could be started very quickly and could be used at other GI centers. They plan to work with families and patients to reduce the perceived barriers via education on cost issues and payment options, and by developing a mentoring program. If successful, the protocol could significantly decrease the number of newly diagnosed patients with Crohn's disease who are initially treated with corticosteroids. Stay tuned.


Jen Smith, MS, RD, LD, LMT, Clinical Dietitian
Nationwide Children's Hospital, Columbus, Ohio




Sitting In It

Or "The Crystal Ball Method of Informed Consent"

Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

 


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


Step up

I have been meaning to write this post for a while but the thought of sharing my voice felt a bit self-glorifying so I held back, until now.  I realize that I may not be the only one holding back, so I decided to open up about getting involved in case others are feeling similar.  That is, wanting to give back maybe, somehow, not certain how, but also not ready to or feeling any desire to rally a crowd or become a spokesperson of any kind, any time soon.

 

I was diagnosed with ulcerative colitis 11 years ago, at age 16.  I have worked on research studies coincidentally linked with IBD since I graduated college and am currently working alongside a lot of big-shots in IBD research while getting my Master’s in counseling.  Speaking about my disease comes easily, trying to create a buzz about it does not.

 

For months I have been contemplating why I am not more interested, more invested in becoming more involved.  But what I also have been questioning is what it means to be involved and at what level it is acceptable.  Whether it is participating in a research study, writing about your experiences, sharing your story with a friend or broadly campaigning for awareness; being involved with a disease that has debilitated you in some way can seem daunting, overwhelming.  Why would I want to think about my disease any more than I have to?  Doesn’t thinking and stewing about this condition only make things worse?  Sure it can.  So if getting involved doesn’t feel right for you, at this time in your life, at this stage in your development or at this phase of your condition, that is OKAY.  Getting involved should make you feel comfortable and empowered.

 

This reminds me of the times I practiced meditation when I was really sick.  I did not focus on or contemplate my disease, no.  Instead, I visualized light radiating above my head where I pretended I was HEALTHY, that I was healing. I did better forgetting I was in pain, had chronic bloody diarrhea and had to eat a limited diet.

 

A friend recently shared an article with me called Engagement in advocacy: Not an all or nothing thing.  This resonated with me.  People considering getting involved come from all walks of life. They might be sick or in remission, they might be emerging from or deep within depression, they might be moving on with their lives happily and healthily and never looking back at the disease, they might be graduating from high school, college or grad school, they might be committed to another cause (just as worthy), they might be mothers of other children, grandparents, friends, doctors or researchers who wish they could do it all but don’t have the time or resources, they might have more skills and resources or less than others, and they might have limited or unlimited availability for whatever reason.

 

No single situation or story is the same.

 

A spectrum of ways to be involved, which encourage and empower every person at any stage to jump in, will welcome more people into the fold and build a community that represents everyone’s uniqueness, as well as our commonalities.

 

I encourage each person to consider what makes them comfortable. Your voice, your experience, your time has value however you choose to share it.

 

[Editor's note: This post was shared by Elizabeth Monti Sullivan. Liz works at the James M. Anderson Center for Health Systems Excellence leading efforts toward establishing a mentoring program and coordinates health care innovations like Passive PRO as part of C3N Project team.]


This is not how it ends.

Thumbs up and thumbs down indicating conflicting opinions Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

 

My daughter was diagnosed with IBD in early 2008. The following is just a snapshot of life then; a story about a high-schooler and her parent experiencing normal life, though ours was further complicated by a chronic illness. Our story might not make anyone's journey any easier, but I hope it will help everyone have a deep-breath moment and think (to quote a favorite song) - this is not how it ends. I hope other parents can relate to these experiences and know they're not alone.

 

Fall 2008: Six months post-diagnosis, I found out we knew someone else with IBD, right in her age group and right at our school. I couldn't wait to tell her when I picked her up at school, but she took the good news with silence. And then she said she knew! She knew? Apparently, he was in one of her classes and mentioned his IBD out loud in class, but she didn't want to "bother him." I eventually (well, maybe very eventually) let the subject drop as I often would during those years. I didn't want to upset her further. Several years later, after high school, the two former classmates connected and shared their experiences. I was very happy, but thought of the knowledge and support we could have gained earlier if not for my child's silence.

 

Note: Whenever I expressed that sentiment (of not upsetting her) out loud to her, it would backfire and she would get extremely upset, saying I was treating her differently now that she had a disease. I couldn't totally deny it, as I knew stress could exacerbate her disease, so I did watch myself. Thus, guilty as charged!

 

Late Winter 2009: She called me from a school bathroom, doubled over in pain. She sounded exhausted and scared, and sheepishly admitted she had been symptomatic for several weeks. She never told me - actually, she outright covered it up, as I asked her often about how she felt with very pointed and specific questions. Now, she sounded desperate. She wanted the blood to stop, as she had a math test the next period and had an A for winter trimester at that point. I gave her a few (extremely reasonable) options, but she rejected them all. She insisted she would get to the test somehow and not say anything to anyone. She hung up on me and was even more upset when I saw her later. Medically, she felt horrible. Academically, she had blown her A. Emotionally, she didn't want to deal with anything, including me questioning the cover-up, its wisdom (or lack thereof), etc.

 

Spring 2011: While completing her senior year internship, a requirement for high school graduation, a new flare. Her internship hours were set, but we needed to schedule a colonoscopy. She did not want to request an accommodation and miss any internship hours. I wasn't allowed to talk to the school either. Thus, the colonoscopy had to be the week after the internship ended - just a few days before graduation. Given her pediatric gastroenterologist's schedule, she did need to agree to have it the day of her internship report. She begrudgingly agreed to do her talk one day early, though two days early (when no other presentations were scheduled) would have been better. When I asked why, it was clear she chose the easy way to avoid discussing details with the school. This meant she had to present and come immediately out to me in the parking lot to start drinking the prep (a few hours late). The colonoscopy occurred as planned, but two nights later, she told me she couldn't even sit still for five minutes without pain – and had been in pain since the procedure! The graduation ceremony was the next morning. After talking to the pediatric gastroenterologist on call, he assured us it was just a difficult colonoscopy with lots of maneuvering; the pain was all muscular-skeletal. Graduation went smoothly, but her choices made that month so much more difficult.

 

Early Summer 2011: The colonoscopy showed nearly the best results we could have hoped for and her medication plan was fine, with one addition, enemas. I was so relieved. She was so upset. Back in the spring, her college had been wonderful when learning of her IBD and even offered a private room right in the freshman dorm. She had refused; she would not alter her freshman experience based on her disease - even now, with the enemas changing her routine up. I suggested she be open with her roommate, but she presented the same freshman experience argument. With downing thirteen pills a day and storing large boxes of enemas in a tiny dorm room, she was going to need to explain something to her roommate, but she just rolled her eyes at the thought. Thus, her nightly bedtime routine at home became a "dress rehearsal" of a strange technique - doing an enema in the bathroom and holding her butt together while shuffling back into bed (note: not an exact enactment of what was to come, as she couldn't practice ladder climbing - yes, she was going to elevate her dorm bed and yes, bed height was also part of the freshman experience that could not be altered. I had given up debating this freshman experience thing by this point!). Ultimately, I am not sure if she ever mentioned her IBD to her freshman roommate. My mom-sense did lead me to casually mention it to her roommate's mom, though.

 

Winter 2012: On the phone from college, she told me she wanted to volunteer as a counselor at Camp Oasis. I was shocked. I was not against the idea; quite the contrary, just stunned. I had begged her to attend as a camper for three years. Not once could I finish the sentence before she shut me down. I could go on about similar refusals regarding IBD learning conferences, IBD peer support events, etc. Although she did happily participate in CCFA walks and other fundraisers, I was still amazed at her insistence on volunteering at Oasis! She applied and was accepted as a counselor. She has been loving it every summer since and admits she wished she had experienced it as a camper. (I can't help but think those four words kids hate to hear from their parents - I. Told. You. So.)


Zip Line MisadventureMy daughter asked me to write this for all the parents and their kids facing the same types of challenges we did. It's not easy - but where you are now won't be where you end up - just like Sami and me.

With much Love to and Admiration for ICN, C3N, and Jennie and Sami, Always,

Sami’s Mom


Words Into Action

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.

Within minutes, I went from sleepy and calm to sobbing and furious. I could hear myself talk, I could hear the escalation of my voice and the rising tremor as I began to cry, but no one was listening. Everything I said was countered – I said, “I want to go home,” and the doctor would say, “Yes, but…” and I would say again, demanding this time, “I want to go home,” and the doctor would repeat, “Yes, but…” Finally I broke eye contact with him, my voice boiling higher and higher, and instructed him just to tell me what he wanted since I clearly was not making my point. “Do whatever you want,” I said, “You just make a decision for me and stop pretending like I have a say, because clearly I don’t. Just tell me what you want me to do.”

I am someone who believes in the patient voice, in working with doctors, in pushing for what you think is right, in being persistent. What had happened to that girl and who was this person, someone who just threw her hands up and willingly handed over her decision-making rights to a doctor she’d never met?

It is very easy to talk about change and use wonderful terms like “patient-centered care” and “shared decision-making.” It is easy, and often it is done with the best of intentions. It is much more difficult, however, to put these things into practice alongside busy lives and complicated patients. How do you achieve patient-centered care and shared decision-making with a patient such as myself, one with refractory disease who has ‘failed’ every traditional medication, has already undergone aggressive surgery, and who sits in front of you on her hospital bed, legs folded, eyes blurry with tears, asking you for the rest of her life, and all you can offer is another fluid bolus. What happens then?

In some ways, it was easier as a pediatric patient when I was not responsible for my care in full. And even though now I have legal rights as an adult patient, to decide what I think is best, in upsetting and frustrating situations I do notice myself defaulting to needing my parents. I find often my doctors are talking directly to my parents and forgetting that I am there. And, like that Monday, sometimes I feel like I have no power or ability to direct my care.

For me, there is an incredible and palpable dissonance between sentiments expressed about chronic illness care at ImproveCareNow Learning Sessions and in my own adult medical experiences. The system at play in many adult hospitals is, in various ways, broken and offbeat with patients – nevertheless, it functions ‘well enough’ that it’s left untouched, unchanged, unaffected by the gleaming and exciting collaborative thinkers just an arm’s length away. As someone who has been steeped in medical decision-making literature for the past several years, it feels appalling and shameful to admit that I hand over my care with such frustration and carelessness as I did that Monday. And yet, I’d also like to think that it exemplifies the sheer monstrosity of the challenges and barriers for patients who aspire to be involved in their care. Is that truly such a futuristic ideal? Is there really not room for me in my own care? As a young person with a chronic illness, I have found these types of encounters to be ineffably defeating and disenfranchising – to have to defend yourself, your beliefs, your values, and your preferences to every person in a white coat is offensive. It is as if the doctors claim ownership of your body, as if they can scrape your soul clean, fix your body, and then hand it back to you, as if a disease is your life versus a disease happening in the context of your life.

So what then am I saying about the young child in clinic, who will sit on your exam table, crinkling the thin paper as they climb up? What does all of this have to do with them? Firstly, it is your job – moreover, your responsibility – as clinicians and parents to empower that child in her medical care, to cheer her on, to apply an unwavering commitment and determination in helping her achieve her goals and ambitions. Even though a child does not have the legal ability to choose, there can always be small decisions for them to make (e.g., “Do you want the needle in your left arm or right arm?” or “Which bandage do you want?”). Secondly – and I wish I could say this to every person face-to-face who is reading to convey the seriousness and weight in this – young patients will grow up and will one day be adult patients. Two of the best strengths you can foster in these children are a conviction for medical advocacy and an unbreakable spirit to defend what they believe in. It may sound insignificant or small, but by always instilling a belief of ownership, we are opening the door to true participation in health care.

Because if we don’t tell them, who will?

Jennie

 


Why?

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

Parents at the Fall 2013 ImproveCareNow Learning Session completed pre-workThe objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


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