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Tag: Advocating for Others

#WEGOHealthChat Recap: Content Engagement Strategy​

What kind of content do you publish on your social channels?  How do you decide what to post?  How do you get around the Facebook algorithm?

During a WEGO Health Awards week chat, finalists from Best in Show: Facebook and Best in Show: Pinterest provided their insights on the matter.

 

 

The first question we had to ask was how exactly do our finalists determine what content to publish?

They suggest first deciding if you plan to be narrow or wide focused. Are you specifically talking about treatments within your community? That’s more of a narrow focus and you’ll want to stick to content regarding treatments. Perhaps you’re just capturing a day in the life, that’s more of a wide focus allowing a variety of content.

 

Hoping to create an engagement strategy? Learn from top patient leaders @HeadacheHeroin, @AaronBlockerIBD & more! Click to Tweet

 

 

Our finalists also encouraged keeping track of your engagements. You’ll learn more about what your community needs this way. Don’t be afraid to ask the community too! It’s totally okay to ask your followers what they would like to see.

Once you determine the content you want to share, how do you keep track of posting it? The finalists suggest utilizing a content calendar with tools like Hootsuite or Buffer. By doing so, you can lay out all your posts for a period of time, download the full recap to learn just how frequently you should be posting!

 

 

Looking for more resources?

Wondering how to foster a community feel? Download our these tips from top patient leaders!


Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Check out her blog and follow Kristen on Twitter and Facebook.

Feature Friday: Martinus Evans – Obesity/Weight Loss Patient Leader

After 20 weeks of physical therapy for a hip pain, Martinus Evans visited an orthopedic specialist hoping for some answers.

“Mr. Evans, it’s because you’re fat and you need to start walking and losing weight.”

Although shocked and embarrassed, Martinus’ response was clear.

Screw walking, I’ll run a marathon.

His doctor said it was the stupidest thing he’s ever heard (#WhatTheHealthcare) but Martinus was determined to do what his doctor felt was the impossible.

Martinus left the doctor’s office, bought some running shoes and created his blog, 300 Pounds and Running.

Starting his blog wasn’t a hard decision, “When someone tells you no you have to prove them wrong.”

And prove him wrong he did. Martinus has ran numerous races the past couple of years.

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Tardive Dyskinesia Side Effect, Not Side Show.

Have you ever felt that you were the one patient who just couldn’t be helped? That was my mindset three years into my search for relief from Tardive Dyskinesia. My only saving grace at that point was my husband; he didn’t entertain that thought and wouldn’t let me. We were both up every morning at 5am, googling “movement disorder specialists,” “neurology,” “extrapyramidal symptoms,” “Tardive Dyskinesia,” and more.

Tardive Dyskinesia (TD) is a chronic condition some people develop after taking anti-depressants, certain GI medications, and atypical antipsychotics.

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#FeatureFriday: Ilana Jacqueline, Rare Disease Patient Leader

February 28 marks Rare Disease Day! The day was created to bring widespread recognition to rare diseases and the patients they impact. On February 28th, patients and families around the globe will share their stories in hopes of promoting awareness of the challenges and needs of those within the Rare Disease Community.

WEGO Health is the first to encourage communities to come together and raise their voice because one by one, our voices can make a difference.

Take Ilana Jacqueline for instance. Day in and day out, she’s effortlessly advocating for her community. At just 22, she created her award-winning blog, Let’s Feel Better.

“Like most patients with rare diseases, I was tossed around for most my life from specialist to specialist without a diagnosis. When, after 19 years, I was finally diagnosed with Primary Immune Deficiency Disease I was relieved, but mostly I was furious. I just didn’t understand how so many doctors could fail to diagnose me.”

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Spread the Word: September 26th is Mesothelioma Awareness Day

September 26th marks Mesothelioma Awareness Day! This day honors those have battled or are still battling mesothelioma. This day is also meant to spread awareness for the disease and the toxic natural fiber that causes it.

What is mesothelioma?

You may ask, what is mesothelioma? It’s a whole lot more than the commercials you see on television. Mesothelioma is a rare and very aggressive cancer caused by exposure to asbestos. It can affect the lungs, abdomen and heart and is typically diagnosed in the later stages due to a long latency period that makes detection difficult.meso1

Once symptoms arise, they are difficult to detect and decipher as mesothelioma symptoms since they are common ailments, like fatigue, hoarseness, nausea, weight loss, chest pain and coughing. It is easy to look past these things, or even at times have them misdiagnosed as other diseases or health conditions.

The prognosis carries a devastating life expectancy of 12-21 months. The saddest part is that it’s totally preventable. We must all come together to spread awareness for this awful disease. Approximately 3,000 new mesothelioma diagnoses are given each year, and about 2,500 people will died from it each year in the United States. Globally, the annual death toll jumps to 43,000.

While the world is making strides to ban asbestos, we’re still not all the way there. Over 60 countries have banned the toxic substance, and another small handful are expected to ban asbestos by 2020. It is sad to say that the United States does not fall under either of those buckets–another reason why we must continue to spread awareness!
How can you make a difference?

To best protect yourself and your loved ones from the dangers of asbestos and the possibility of mesothelioma, be on the lookout for asbestos dangers in your home and environment. Houses that were built before the 19meso70’s very commonly contain asbestos. For a list of places and products that may contain asbestos, click here.
In addition to educating and protecting yourself and your family, you can help spread the word through your blog or social media platforms. Every new set of eyes on this message means we’re a step closer to 100% awareness of mesothelioma and the dangers of asbestos. When every person knows, they can then protect themselves and avoid the very unfortunate health complications.

If you’d like to help ban asbestos, you can sign a petition listed by the Asbestos Disease Awareness Organization (ADAO) here! As mentioned above, approximately 60 countries have banned asbestos, which means there’s a lot of ground to cover in terms of banning it worldwide. We cannot stop fighting until this toxin is banned globally!

 


screen-shot-2016-09-23-at-10-29-49-amThe Mesothelioma Cancer Alliance is dedicated to serving mesothelioma victims and their families. Make sure to follow them on Twitter and Facebook for the latest updates!

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