小时候在溃疡性结肠炎
A diagnosis at 13 years old, Marisa Troy’s life and her aspirations were greatly impacted by her IBD.\r\n"}}" id="text-e33b415694" class="cmp-text">
13岁的诊断,玛丽莎特洛伊的生活和她的愿望是极大地影响她的炎症性肠病。
陷入痛苦的现实
As a child, swimming for Marisa Troy was more than just splashing around in the New York summers. Each dip in the water brought images of trophies and swim meets, a future in competitive swimming. At 13-years-old, when life is already starting to become confusing, Troy was dealt a blow that would change those dreams and aspirations. She was diagnosed with ulcerative colitis, an autoimmune disease that causes ulcers and inflammation in the large intestine.\r\n
“I was suffering for a few months and couldn’t speak to anyone about it except my parents,” recalls Troy. “I had diarrhea, abdominal pain, and decreased appetite which wasn't like me.”
\r\n"}}" id="text-bc986211d0" class="cmp-text">作为一个孩子,游泳玛丽莎特洛伊中戏水不仅仅是纽约的夏天。每个蘸水把奖杯和游泳的照片符合,未来竞争游泳。在13岁,当生活已经开始变得混乱,特洛伊城被打击,改变这些梦想和愿望。她被诊断为溃疡性结肠炎,自体免疫性疾病,导致大肠溃疡和炎症。
“我遭受几个月,不能向任何人谈论它,除了我的父母,“特洛伊回忆说。“我有腹泻、腹痛,食欲下降,不是喜欢我。”
Her mother, who was a big advocate for her health being her caregiver and parent, quickly got her to a gastroenterologist. At her exam, there was blood which then led to a colonoscopy and a diagnosis, but Troy knows not everyone’s journey to an answer is as quick. “I’m grateful for my parents, but even with their help there were still a lot of unknowns,” says Troy. “Today my relationship with my doctor is different because I understand my body and I’m willing to share more.”\r\n"}}" id="text-5bacfcfe44" class="cmp-text">
她的母亲,她是一个很大的倡导健康照顾父母,很快就把她的胃肠病学家。血液在她考试,然后导致了结肠镜检查和诊断,但特洛伊知道不是每个答案的旅程一样快。“我很感激我的父母,但即使是在他们的帮助下仍有很多未知数,“特洛伊说。“今天我和我的医生的关系是不同的,因为我了解我的身体,我愿意分享更多。”
建立良好的人际关系
Troy has had 15 abdominal surgeries including the removal of her colon, and now lives with a permanent ostomy. Her IBD sent her life in directions she never imagined. It also led her to find love.\r\n
“I had a friend that was going to an IBD event, a fundraiser, and I had never been to one before,” describes Frank Garufi, who at the time was a single father to a son with Crohn’s disease. He made the nearly 4-hour drive where he was drawn to Troy the moment he entered the room, and their connection quickly grew deep.
\r\n“Prior to meeting Marisa, there was a point in time where I felt like I was the only person in the world who was going through this,” says Garufi. His son developed IBD symptoms at just 2-months-old. “I kept going from doctor, to doctor, to doctor, trying to figure out what is going on here? What's wrong with my son?”
\r\nGarufi says it took more than three years for his son’s diagnosis, but it came when they finally visited gastroenterologists at a prominent IBD center. “We got to a place where they truly understood what this disease was like and were on the forefront of doing research and development into IBD.”
\r\n"}}" id="text-7234863153" class="cmp-text">特洛伊已经15腹部手术包括结肠切除,现在生活在一个永久性造口术。IBD给她生活的方向她从未想过。它还使她找到真爱。
“我有一个朋友,一个IBD的事件,一个资金筹集人,之前我从未去过一个,”描述了弗兰克·加鲁菲,当时一个父亲的儿子与克罗恩病。他做出了近4个小时开车,特洛伊吸引他进入房间的那一刻,和他们联系迅速发展壮大。
”玛丽莎会议之前,有一个时间点上,我觉得我是世界上唯一的人经历这个,”·加鲁菲说。他的儿子出现了炎症性肠病症状仅两个月大。“我一直从医生,医生,医生,试图找出什么是怎么回事?我的儿子怎么了?”
·加鲁菲花了三年多说他儿子的诊断,但当他们最后访问的胃肠病学家们发起了著名的IBD中心。“我们到达一个地方,他们真正理解这种疾病是怎样做研究的前沿和发展,并为炎症性肠病”。狗万正网地址
结合IBD社区
Today the couple are grateful to the scientists who have persevered in researching the chronic disease, applying new learnings to the care for children living with IBD. Along with the gratitude, they help raise awareness of IBD by sharing their experiences. Troy and Garufi both blog about their respective stories as a young person living with ulcerative colitis and a caregiver to a child with Crohn’s disease.\r\n"}}" id="text-3d64a832a2" class="cmp-text">
今天这对夫妇感谢科学家们坚持研究慢性疾病,应用新知识与IBD照顾孩子的生活。除了感激,他们帮助提高对IBD的认识通过分享他们的经验。特洛伊和·加鲁菲博客对他们各自的故事作为一个年轻人生活在溃疡性结肠炎与克罗恩病和照顾孩子。
“I told my parents, I vividly remember in the hospital that the only way that any of the horrific things that happened to me would make any sense at all was if I could turn it around and help people,” recalls Troy.\r\n
Others in the IBD community have reached out, thankful for sharing and showing them they’re not alone.
\r\n“It opened up a whole new world,” says Garufi. “There was a frustration of hopelessness that I had that all of a sudden the more I started talking about this and the more I started trying to connect with other people, that helplessness started to fade away. I started to feel like not only was I helping other people, but other people were helping me which allowed me to be a better caregiver to my son.”
\r\n"}}" id="text-98364af5ec" class="cmp-text">“我告诉我的父母,我清楚地记得在医院的唯一途径,任何可怕的事情发生在我身上会有意义是如果我能扭转局面,帮助人们,“特洛伊回忆说。
IBD社区中的其他人伸出,感谢分享和展示他们并不孤单。
“这开启了一个全新的世界,”·加鲁菲说。”沮丧绝望的我,突然我开始谈论得越多,我越开始尝试联系其他的人,无助开始消失。我开始觉得我不仅帮助别人,但是其他的人帮助我,让我成为一个更好的照顾我的儿子。”
Media inquiries:
\r\n
\r\nShannelle Fowler
\r\nEmail: Shannelle.Fowler@abbvie.com
\r\nCall: +1-773-421-6310\r\n"}}" id="text-2587aac565" class="cmp-text">
\r\n
\r\nShannelle Fowler
\r\nEmail: Shannelle.Fowler@abbvie.com
\r\nCall: +1-773-421-6310\r\n"}}" id="text-2587aac565" class="cmp-text">
媒体询问:
Shannelle福勒
电子邮件:(电子邮件保护)
电话:+ 1-773-421-6310
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