Title: Inflammatory Bowel Disease - Smart Patients
URL Source: https://www.smartpatients.com/forums/inflammatory-bowel-disease
Markdown Content:
The Smart Patients Inflammatory Bowel Disease Community is a resource especially for patients, their family caregivers and other loved ones affected by IBD, a chronic autoimmune condition involving the intestines.
“This site is a safe place for many of us to learn, vent, grow, and just be. I am so appreciative of this site and the people on it.”
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“I’m finding there are not many organs spared by Sjogren’s. If it decides to attack, it can attack.”
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“I can’t believe I found this site! I am not alone after all!”
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“If you need to blow off steam or just need to get it off your chest. This is the best site ever.”
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“Keep talking. Keep sharing. Keep pushing the envelope for best care.”
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“I advocate strongly for my daughter, but sometimes her strength &confidence blow me away.”
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“People might think that those suffering from an autoimmune disease are faking being ill. The truth is that they are faking being well.”
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“Let us, as parents, resist the boundary of professional distance and push to see the world from the perspective of our clinician. Eyes wide open. Willing to embrace their reality. And I promise you…it will change relationships.”
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“I would want to let my children’s medical team know how much I appreciate them.”
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“Ask what to watch for and when and how to report them. That way, if a reaction does occur, you know exactly what to do. Knowledge is power, and can ease your concerns.”
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“One minute earlier their child didn’t have a disease, and now they do. That is why parents are overwhelmed. It isn’t because of the pamphlet or the internet or the binder or the follow-up appointment.”
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“I feel like it’s my opportunity to advocate for all the families that are seeing changes with the full knowledge that at any point it could be us.”
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“We need to change how the world “sees” our disease. ”
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“What we have here, in this community, are many different “me too” or “I’ve been there” stories. This is what separates this space from reading journal articles or asking Dr. Google.”
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“It is always so comforting to know I can reach out to all of you and gain so much knowledge from your experience.”
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“I’m grateful for communities like these that have taught be how different IBD is in every one and it’s so hard to treat with one ‘prescription’ or one set ‘formula’. Mom knows best.”
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“as parents we have a common bond, awkwardness is swept aside and we are armed with data, research and a willingness to do ANYTHING for our children with IBD and to help our care centers to Improve Care Now!”
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“Imagine a situation where I tell you what is best about my care center and you tell me what is best about your care center. If we combine all of those “bests” and introduce the concepts at our medical home…we could literally change the world for our kids!”
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“There are 311 medicines currently in development for autoimmune diseases, and the science continues to evolve as the biopharmaceutical industry uncovers the causes of these diseases.”
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“When I first met him 38 years ago, he claimed he wouldn’t marry because he couldn’t ask anyone else to live with Crohn’s and all it implies. Well, we fixed that.”
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About Smart Patients
Smart Patients is an online community for patients and families affected by a variety of illnesses. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.
We believe patients are the most underutilized resource in healthcare. We’ve watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same.
