ImproveCareNow Patients_&_families


ImproveCareNow Announces Innovation Fund to Support Patient and Parent Projects

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We know that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow is pleased and proud to announce the launch and pilot year of the ImproveCareNow Patient and Parent Innovation Fund.


To Scarlet

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This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.


My Story in Extremes

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Five years ago today, on February 21, 2012, I was diagnosed with IBD.

Thinking back on my five years living with IBD, I realize that there have been many ups and downs, with struggling and succeeding, falling backwards and moving forward. I was 16 years old and in perfect health, up until about two months before my diagnosis, when I started experiencing severe symptoms. It was all so sudden and impactful. I went from being perfectly healthy to being extremely sick; from having no symptoms to having every symptom on the IBD list. On the five year anniversary of my diagnosis, I thought what better way to look back and reflect than to highlight some of the extremes in my story:


What's the buzz on Buzzy?

Liz is a mom of three whose youngest son was diagnosed with ulcerative colitis (UC) at age five. To manage his UC he takes Humira injections, which are known to be painful. Liz remembers vividly how stressful and difficult it was to get past the pain and anxiety on injection day. The process of negotiating would take nearly an hour, and when the shot was finally given everyone was totally drained. Not willing to accept that this was just the way it had to be, Liz started researching and discovered Buzzy - a device that distracts from injection pain by confusing nerves with both temperature and vibration.

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Remission, I am coming for you

"Remission." – the word many living with a chronic illness hope to hear one day. Remission is such a wonderful time of less symptoms and less doctors, but as many of us know, remission doesn't always last forever.

Since being diagnosed with Crohn's disease eight years ago I have only been in remission once, for about a year and a half. It was like coming up for a breath of fresh air. I was being drowned by Crohn's. And while a year and a half totally seems like a long time, it really wasn't. In nearly the blink of an eye, I fell out of remission and began fighting the most brutal flare I have ever known.


Older, not wiser

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In 2012 I wrote It’s OK to say it sucks! I was rereading that post and thinking that even though I’m older, I’m not necessarily any wiser. Here’s what I mean.


PAC Welcomes Five New Members

Let's give a warm welcome to - and get to know - five new members of the Patient Advisory Council (PAC). Nicki, Rebecca, Becky, Sarah and Abigail are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent over 27,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.


My American Academy of Pediatrics Talk

I was honored to be invited to talk about my joint experience as a young adult with IBD and medical student at the American Academy of Pediatrics National Conference and Exhibition in San Francisco. Guided by the philosophy of ImproveCareNow (I am a former co-chair of the Patient Advisory Council), I emphasized the necessity of patient and parent partnerships, as well as the value of mentorship and representation of disability in medical education. I invite you to watch my talk:

 

 

 


Flu Season

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Yesterday I felt tired. This concerned me.

I’m used to feeling tired at the end of my Remicade cycle, but I had my last infusion four weeks ago. With four more weeks until my next, I should be at my physical peak. 

It could have been the cold weather, or the rain, or my night of restless sleep. It could be the stress of my two exams next week, or the consequence of running around campus from seven in the morning to nine at night. 

The cause of my fatigue could be any of those reasons. Or it could be the flu.


This is Why I ImproveCareNow

Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…

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