End the Burn: World IBD Day 2017

World IBD Day 2017

Here we are again. This is my third year participating in World IBD and I am SO excited! Awareness and advocacy is my passion and any chance to get a little extra awareness in is always good. So what is World IBD Day? According to WorldIBDDay.org, it’s a day led by world-wide patient organizations and began in 2010. Many patients come together as a collective voice to raise awareness.

What is IBD?

IBD (Inflammatory Bowel Disease) affects approximately 5 million people world-wide. Sadly, the number of patients grows every day–particularly among young children. Crohn’s disease, ulcerative colitis and indeterminate colitis are the three main types of IBD. While IBD is unpredictable and may present itself in different ways to different people, the most common symptoms include:

• Nausea
• Vomiting
• Fever
• Weight Fluctuations
• Diarrhea/Constipation
• Bloody Stools

As of now, IBD cannot be cured. Treatments vary, but finding the right treatment can be a difficult and frustrating process for patients. Many of the treatments include harsh medications such as corticosteroids, immunosuppressants and even surgery. Patients living with IBD may also deal with depression, PTSD, isolation and poor body image perceptions.

Why should I care about World IBD Day?

I could say too much here, but there are many, many reasons you should care about World IBD Day. Let’s look at what patients living with the diseases say…

“Like every other disease, no one knows or cares because they don’t know what really happens until it hits home. Unfortunately, that is human nature. It did hit home in my family and was a real education. I hope and pray that a cure will be found for all those that are suffering from IBD.” ~Veronica LaBianca

“Just like any other disease, IBD patients need love and support. People need knowledge and understanding, so the next time an IBD patient has to urgently use the public restroom they are not laughed at or denied quick access. IBD is not only a “pooping” disease, it can cause many other problems and the more people know about it, the better the understanding would be if an IBD patient has to call off work or cancel plans due to fatigue, depression, anxiety, abdominal pains, joint soreness, brain fog, etc. Some days it is hard just to get out of bed.” ~Marilyn Hunter 

“They should care because, just like any other disease, it is devestating for the patient and their families. We need to find a cure so people can live normal, healthy lives.” ~Tiffany Sisk Smith

“They should care because IBD changes those you love. Watching someone you love suffer with IBD is hard. It changes lives and not for the better.” ~Donna Anderson

“It can happen to anyone… including them or someone they love.” ~Sarah

“Knowledge is power. Like many others have said IBD most likely effects someone the know and care about.” ~Anna

“Someday it could be you or yours. It can easily go undiagnosed or misdiagnosed if you don’t know what it is.” ~Mike

“I think they should learn or listen because just like it did to us, it can hit or impact them at anytime. My best bud has been listening to me say stuff from time to time for 15 years and recently his son was diagnosed with Crohn’s. Knowing what I’ve told him and not being scared or embarrassed to ask me a question has greatly helped his connection to his son and his disease.” ~crohns_bro77

And these are only a few of the many, many comments that I received explaining why people should care about World IBD Day. The truth is, these diseases are difficult to live with. And if you don’t have the support you need, it’s ten times worse. The sad reality is that unless you have dealt with a chronic illness on a personal level, you’ll never truly understand. Sympathy is good, but empathy is even better.

How can I help raise awareness?

Hashtags

There are many ways you can get involved and help raise awareness for inflammatory bowel diseases. On World IBD Day, many patients and caregivers around the world will be posting graphics, information and personal stories. I would recommend you start by searching for the following hashtags on Facebook, Instagram and Twitter:

#WorldIBDDay

#WorldIBDDay2017

#IBD

#Crohns

#Colitis

#INDcolitis

I’ll have my own hashtag that I’ll be using (#EndTheBurn) in addition to some of the others above.

Profile Pictures

There are also several people offering free profile pictures for you to use. I made the one below. Feel free to save it and use it as you wish.

I will be posting on my social media channels throughout the day on May 19th. Some of the things I’ll be posting are graphics, blog posts, infographics, facts about IBD and more. Please feel free to share anything you see that you like from my blog or any other social media outlets. I’ll be sharing not only my own content, but the content of other advocates and patients as well. I feel like the more people we have posting, the better our chances of reaching a larger audience.

Talk it Out

Another way you might get involved (if you don’t have IBD) is starting a conversation with a friend or family member who lives with the disease. Ask general questions–don’t be pushy if they don’t feel like discussing it. Some patients are intimidated and still very shy when it comes to opening up about it. Especially if they haven’t had the disease for very long or have had bad experiences in the past when trying to be open about their disease.

Sharing is Caring

If you are a patient, I would encourage you to try sharing your story. It could be a sentence or two, or it could be a long, detailed history of your battle. You might even share a photo or two of what IBD looks like (a photo of your scars, or you in the hospital). The more people know about how IBD affects us, the better our care will be; both physically and mentally.

Still Not Sure?

If you are still at a loss of where to begin, perhaps you could share some of the following blog posts: