May 21st, 2015

Caregiving #HAchat with AARP and Amy Goyer #caresupport

by WEGO Health

This week, we hosted a Twitter chat with AARP and special guest, Amy Goyer, on caregivers and the resources available to them. Were you unable to join the chat? We’ve got you covered! Check out the recap below:

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May 20th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Sara

by WEGO Health

 Check out what Sarah has to say about her health activism and the advice she’d give to patients beginning their Health Activism. 

Sara

1. Why did you become a Health Activist? Tell us your health activist story.

I started Inflamed & Untamed in 2011 after six weeks in the hospital, having to stop work and school again. I didn’t have anything to do to fill my time and I became depressed alone at home feeling worthless and like nothing I did had any purpose. I opened my computer and recorded my first video blog and uploaded it to YouTube. From there I started writing blogs and doing videos frequently not expecting it to go anywhere, but it blew up pretty fast! I felt like I had a real purpose after that. :) read more »

May 19th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Kendal

by WEGO Health

Check out what Health Activist, Kendal, has to say about her health activism and her goals for 2015!

hawinner

1.  Why did you become a health activist?

After being diagnosed with Lyme Disease in 2014, I was inspired to explore happiness through a healthy lifestyle, and of course, all while wearing a great pair of high heels!  I became gluten, dairy, and soy-free and began to experiment in the kitchen.  What I discovered was a new world filled with wonderful flavors!  I began to photograph my journey and as my passion for healthy living grew, I knew I needed to share it with others…thus, the birth of my blog, Health and High Heels!  Come visit me at healthandhighheels.org.  This is where I share my healthy recipes, photographs, “fun foodie facts,” and healthy product reviews.  My goal is to excite you about healthy living and to encourage you to try a recipe or two, visit your local farmer’s market for fresh organic produce, or even come up with original recipes! Overall, I urge you to begin discovering what healthy living means in your life!

2. What are your goals for Health Activism in 2015?

My goal is to continue promoting Lyme Disease and nutrition awareness through my blog, speaking engagements, and social media!

3. What awareness event or effort are you most excited about in your condition?

I am really excited because the month of May is Lyme Disease awareness month!  I can’t wait to continue spreading awareness throughout my community and helping others understand what it’s like to live with an invisible chronic illness like Lyme.

4. If you could tell others a few things about your condition and your community, what would you want them to know?

According to LymeDiseaseChallenge.org, “Lyme Disease has been called ‘The Great Imitator’ and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.”  Also, “Over 63% of patients treated for Lyme Disease continue to suffer symptoms that can be debilitating,” but “fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.”

5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?

My advice would be to only begin the health activist journey if you are truly passionate about it and want to dedicate a tremendous amount of time and energy to creating awareness and making a change.

 


 

You can connect with Kendal on her website, and her Facebook and Twitter accounts.

 

May 15th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Pam

by WEGO Health

Pam

1. Why did you become a Health Activist? Tell us your Health Activist story!

My mother-in-law became ill in the early 1990’s with a form of multiple system atrophy, a rare, serious neurodegenerative disease which took her life in 1998.  Very little was known about the disease back then and my own search for more information about it led me to help others who were also seeking answers.   I’ve been a leader of online support groups since 1995 where I have helped countless patients and families read more »

May 14th, 2015

Raising Awareness #HAchat

by WEGO Health

Check out the latest from this week’s #HAchat. What do you think consists of an effective awareness campaign? Scroll through Tuesday’s chat to see what participants had to say.

 

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May 13th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Megan

by WEGO Health

Check out what Megan, the winner of Best in Show: YouTube, has to say about her health activism and what she’s looking forward to in 2015! 

Sara

 

1. Why did you become a Health Activist? Tell us your Health Activist story!

I was diagnosed with a form of Inflammatory Bowel Disease called ulcerative colitis (UC) at two years old. The pain and discomfort is something that I will always remember. Some of the very first memories that come to mind are the hospital visits.  My colon was removed and a J-Pouch was created with a temporary ostomy due to severe UC. The J-Pouch lasted for most of my life until my freshman year of college and that is when rocks hit the windshield. The J-Pouch developed a fistula, which lowered my quality of life. My body was becoming very weak and as a result my rib cage could be seen. The only option that would give me relief was an ileostomy.

Ostomy surgery itself is very scary. People that undergo this procedure are usually scared of the surgery itself but they don’t think about the aftermath. Surgery is just the first hurdle. When I woke up from surgery and looked at my wonderful stoma, I thanked it for saving my life. It was my savior. Before surgery, I thought that there was a one size fits all ostomy appliances that everyone wore. That was dead wrong. After the hospital stay, I went back home with a stoma nurse visiting me every few days. That is when I found myself drowning in ostomy choices.

The research engulfs every moment of my spare time just to find the right product to fit my body. There isn’t an Amazon reviewer tool that an ostomate could use to find the right product. That is when I got the idea for making a YouTube Channel dedicated to ostomy product reviews. Thus, The Front Butt YouTuber Channel came into existence to help explain products to fellow ostomates.

If someone asked me back in 2013 where I would be now, there is no way I would dream that my life would be this amazing. People from all over the world send me messages just to share their stories and talk about ostomy stuff. It’s quite humbling.

 

2. What are your goals for Health Activism in 2015?

2015 should be a great year. The Front Butt YouTuber Channel has gotten a few amazing upgrades such as a new video recorder, clear microphone and branding. I hope to be working with a few ostomy companies to roll out more ostomy reviews as well. I also hope to add more vlogs so people can see how cool ostomies are in real life.

My main goal in 2015 is to reach outside of the ostomy community to educate people on IBD and ostomies.

 

3. If you could tell others a few things about your condition and your community, what would you want them to know?

Inflammatory Bowel Disease can be a life crippling illness. Some people can’t even leave their house or hospital because of the horrible pain it gives them. Some of us are lucky enough where surgery can help IBD symptoms subside. Ostomies shouldn’t be looked at so negatively. My ostomy saved my life and gave me the chance at a “normal” life as well. The IBD/Ostomy community is HUGE. Many people have IBD and/or an ostomy and love to share their stories. No one should ever feel alone, that is what the community is here for.

 

 4. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?

Shoot for the stars! Even if someone’s health activism is small, it helps. If we just talked to one person about an illness or a surgery then that is one more person that is educated. Don’t be scared if you stumble, just get right back up and don’t look back. Speaking for someone who can’t do it for themselves is a wonderful gift. The most important thing is to be yourself. By being yourself, you will attract people because it creates trust on a whole different level.

 


 

You can connect with Megan on her YouTube, Twitter and Facebook accounts.

 

May 12th, 2015

Cushing’s Disease Blog Challenge Highlight

by WEGO Health

Cushing’s Disease bloggers were prompted to write for the 30 days of April during the Cushing’s Disease awareness challenge! Check out these blog posts from three Cushing’s Disease Health Activists to learn more about their experiences.   cushingsimage   read more »

May 11th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Ashley

by WEGO Health

Check out today’s blog from Health Activist Award Winner, Ashley. 

ashley

 

 

1. Why did you become a Health Activist? Tell us your Health Activist story!

I am often referred to as “feisty.” You can blame it on the red hair (like my husband does) but it’s fake: I was born this way. And though my chutzpah has gotten me into trouble once, thrice, or a hundred times, it has been the driving force behind my life-long quest to answer one question: what is wrong with me? Like The Little Engine That Could, I just kept chugging up the mountain, seeking answers, rejecting the ones that didn’t make sense, and never losing hope that I would find an explanation for what ailed me.

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May 11th, 2015

Tuberous Sclerosis Complex Awareness Month – Taking a Closer Look

by WEGO Health

mixed up mommy

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May 7th, 2015

Patient and Caregiver Health Activist Twitter Chat

by WEGO Health

This week, Health Activist Carly, hosted a chat on the relationship between patients and caregivers. Check out the informative conversation below!

 

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