CCFA to Study Impact of Specific Diets on Crohn’s Disease – IBD in the News
Top Crohn’s Accounts to Follow on Twitter
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Living with an inflammatory bowel disease (IBD) isn’t easy. The flare-ups, fatigue, and social stigma can all add up to make people with Crohn’s disease feel isolated or alone.
That’s where social media can help. Both IBD-focused organizations and a community of people living with Crohn’s are active on Twitter, and they tweet about everything from their personal experiences in managing the disease, to resources that can help you cope with the condition, to new research about treatments and therapy choices.
If you have Crohn’s disease and want to connect with people who can empathize, here are some Twitter accounts you may want to follow.
The Crohn’s and Colitis Foundation is often the first organization that newly diagnosed people encounter. And for the most part, it will remain an important resource throughout their lives. The Foundation connects you with a network of doctors, advocates, and people living with IBD and offers a sense of community that extends to its many social media platforms. Follow them on Twitter for information on the latest IBD-related research, advice on how to live well, and ways to contact others who are living with the disease.
Frank Garufi Jr. created the Crohn’s Colitis Effectfor his son, Domenic, 9, who has been living with Crohn’s disease since he was born. The project, which includes a blog and a YouTube channel, is dedicated to spreading awareness, supporting people with IBD, and providing a real-life perspective on Domenic and how he manages his condition. On Twitter, Frank shares the latest news and research on IBD, inspiring personal stories, and resources not only for people living with Crohn's but their loved ones as well.
Thaila Skye has been living with Crohn’s disease since 2009. But the disease took a turn less than a year later, when she went into emergency surgery to have part of her colon removed. Skye now blogs about her life with IBD and the ups and downs of living with an ostomy bag. Her tweets tend to focus on her day-to-day life: updates on how eager she is to see an upcoming movie, or photos of herself wearing a new sweater. “Having Crohn’s disease and having a stoma shouldn’t rule your life,” she says, “and you should be able to focus on the things that make you happy.” Skye also hopes to inspire people who have been newly diagnosed or told that they need to have a stoma. “They can see that I’m just a normal person living life," she says. "I just happen to have a bowel condition."
After being diagnosed with Crohn’s in July 2005, Natalie Sparacio Hayden, a former TV news anchor, created the blogLights,Camera,Crohn’s. Her goal: To “be an advocate for those battling inflammatory bowel disease and to show that a chronic illness doesn’t have to dull your sparkle.” Her blog — and by extension, her Twitter account — covers everything from overcoming day-to-day struggles to celebrating small victories.
Ali Feller was diagnosed with Crohn’s disease when she was 7, but IBD hasn’t kept her from training as an athlete and a runner. By day, she’s also a writer and editor who hosts a podcast called "Ali on the Run." While much of her podcast and Twitter account focuses on running, Crohn’s is a big part of Feller's life, and the subject comes up often. Follow her if you’re athletically inclined or for some inspiration to help you get moving.
Lindsay Washburn has been living with Crohn’s disease since she was 18. Now, more than a decade later, she’s undergone a number of treatments, including a stoma. She considers the type of content she shares on Twitter to be raw and truthful. “I don’t censor myself or anyone else,” she says. “This disease does awful things to our bodies and our lives, and the more people that know what this disease truly does to us, the less fear and stigma there is for us.” As she frames it, “I give you life with Crohn’s disease — warts and all.”
A financial planner from Texas, Jeff Yager was diagnosed with Crohn’s after being hospitalized and losing 30 pounds. He then spent a year cycling on and off various treatments before finding the therapy that worked for him. His blog,Crohn’s Zone, began as a way for him to keep track of his own health, but now he uses both it and his Twitter account to share information with other people living with Crohn’s. “What is interesting," he says, "is how large of a community there is of Crohn’s patients, doctors, and surgeons on Twitter who just focus on Crohn’s or inflammatory bowel disease."
Stephanie Hughes was diagnosed with Crohn’s disease in 1999 at the age of 13. After several years of painful and sometimes embarrassing symptoms, she underwent surgery in 2012 to have her colon removed and was given a permanent ostomy. On her blog,Stolen Colon, she writes about her life as a woman and mother with an ostomy and invites others to share their experiences with their #ostomystory. She shares all of these posts on her Twitter account, as well as personal photos from her health journey.
Sara Ringer lives with not one but two chronic illnesses: Crohn’s disease and chronic intestinal pseudo-obstruction (CIP), a very rare, potentially disabling gastrointestinal disorder characterized by abnormalities affecting the involuntary, coordinated muscular contractions of the gastrointestinal tract. She writes about her health on her blog,Inflamed and Untamed, and tweets about her experiences with the conditions; she also shares educational resources and information she learns at IBD conferences.
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