Valuing Your Expertise As A Patient Leader

This discussion topic refers back to the “Valuing Your Expertise As A Patient Leader” Course. If you haven’t taken it yet, head over to explore and learn: https://wegohealth.influitive.com/channels/18.

Patient Leaders in the WEGO Health Patient Leader Network range from public speakers to survey-takers to non-profit executive directors and CEOs.

How are you going to make your mark on the advocacy world?

Let’s use this discussion board to share how we’re using our skills to advocate and impact the lives of others. Are you utilizing a formal schooling background, learned experience or new skills that you’ve picked up during your advocacy work?

Let’s not recreate the wheel - by collaborating and learning from each other, we can impact countless patients worldwide.

You can start by sharing projects you’re working on, areas within the healthcare landscape you’re diving into and other tips and tricks you’ve picked up while advocating.

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I actually will jump in and start the thread.

So whenever I was younger I wasn’t exactly sure what I wanted to do. I ended up going to school for management information systems and worked for a major consulting company right out of school. I focused on IT, but really learned a lot of business process, organizational structures and essentially received a great business background.

Whenever I went out on disability for psoriatic arthritis and avascular necrosis I tried to tap into my consultant background to really help me in all aspects. 1) I created a ridic spreadsheet to track symptoms and unlock triggers 2) I used my business background to try to collaborate with companies and build a foundation of a career.

Once I was able to get off of disability I then used my educational background, my work experience plus my health experience and married them together. Now working at WEGO Health I’m able to tap into all of them every day.

I love to give the advice that you really need to look at EVERYTHING you do and EVERYTHING you’ve experience in your life. If you’re an amazing photographer, can you tap into those skills to showcase your advocacy? If you love public speaking, can you draw on those skills and begin speaking at events? If you’re great with words, start a blog or maybe write a book!

There are so many ways to advocate - I love that there is not just ONE path. We can all make our own way :slight_smile:

Can’t wait to hear how you’re using your background to advocate!

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After I graduated with organic chemistry & worked in production of colours for 13 years & dived into International marketing,Exports at 33.
I traveled to 35 countries, 150+ overseas trips in 11 years in a row & European customers calling me as cowboy.
Thorough I never smoked or chewed tobacco, diagnosed with Larynx cancer (vocal chord) in last stage & had virtual hand shake with death. Undergone massive surgery & radiotherapy & was back to work in 10 weeks with artificial device to speak known as Electro Larynx.
Because of different sound quality, was hesitating to speak in public & was causing much frustration.
That affected my own business & family of 4 (wife, 2 sons of 21 & 19) largely.
Having understood difficult situation, accepted what lies ahead in life & ignored what outsiders would think about my voice & I started talking with full confidence, courage & started life 2.0 with full momentum & never looked back.
Having seen my die hard come back, my Oncologist proposed me to start counseling patients diagnosed with cancer on one to one basis & then I started addressing cancer patients & care givers through support groups, live talk shows with slides in India & abroad.
Announced as MVP Champion & Ambassador by Australian digital app & my cancer winning journey featured internationally & also by medical college.
Presented live Motivational talk show in UK & India, targeting young generation, medical students.
Using Facebook & other social medias connected with several thousands of cancer patients, care givers & medical professionals.
Received many National & International awards.
Recently anchored & presented advocacy through live telecast for 2 hours on behalf of State Government in India & reached 2.5 million families at grass root level.
I cover following topics during my all advocacy events with slides:
#early diagnosis, timely completion of entire treatments for cancer
#there is life even after cancer

fighting cancer without fear

going back to work after cancer treatments.

In my case, my differently abled voice is my asset & unique identity as cancer winner in 22nd year & that’s helping me for impactful ADVOCACY globally.
I would be happy to answer queries from fellow patient leaders & professional advocacy opportunities.
Best wishes to all patient leaders & admins of #WEGOHEALTH.

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I participate in advocacy in-person and online. Some of the ways include videos, blog posts, helping companies or organizations to improve their existing content on websites or blogs from a patient perspective, in-person presentations, online speaking engagement, webinars, interviews on others podcasts, project creation specific to diseases I want to bring awareness to, product testing and review, product promotion and review, patient advisory boards, WEGO Health Truvio® Mobile Surveys, paid studies and surveys, awareness campaigns, influencer marketing, patient ambassador, video testimonials, twitter chat participant &host, expert commentary for media, graphic design, video content creation, voice over for video content and so much more. This is my life purpose. If I have to live with so much pain… this is my way of living life to the fullest!

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I am a WEGO Health Patient Leader who advocates using conventional and social media tools. I share from where I am whether I am online or on Capitol Hill. I write emails, make phone calls and travel to local district offices as well as Washington D.C. I will use my voice to have the voice (my voice!) of patients heard.

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i feel like the best way to advocate would be via social media marketing

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I have a twenty year history in IT project management. Once my cognitive issues are flushed out, I’d like to write a book. Additionally, I’m interested in patient advisory boards, product testing & review, and paid studies/surveys. I’m a fluid thinker, so things change frequently!

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I have never really called myself an advocate until recently, but I’ve been an advocate for many years. The way I can make myself valuable now is by answering questions because I have an extended family and I have experience in so many areas as a caretaker. I operate on the word passion so I would love to be on a patient advisory board. Paid studies and surveys are a plus for me as I am a 40 year old new student again because I am back to advocating! I’m just not sure how to connect my background in aviation to this, not that I have to.

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My biggest experience so far has been sharing my experience(s) and advice on my blog, Kate the (Almost) Great, which fits into the content creation category. I have experience doing and sharing research through my undergrad and graduate degrees, which definitely comes in handy. But I would really like to get more involved in speaking and working with pharmaceutical companies!

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Bringing my skills as a digital marketer! I’ve been working in healthcare for the past six years and have helped develop campaigns for other advocates, and now I’m using those skills to amplify my own cause and help others seeking information about living with menopause. My background is in writing and editing, and over the past few years, I’ve worked for a nonprofit organization and an advertising agency, doing digital strategy, content marketing, PR, social listening and social media campaign development, graphic design, SEO, and analytics. In addition to managing a blog about menopause and writing about science and research, I’m offering services as a consultant to help others seeking to build a platform. Still in pre-launch phase, but kicking things off officially for Menopause Awareness month in September!

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I’ve been hosting a tweetchat for over 4 years now, but i want to take that to the next level. I want to maybe starting doing podcasting or video interviews. I am even looking forward to expanding the chat via video.

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I have epilepsy. While it was under control I worked doing ultrasounds. I would talk to ladies that also had a history of epilepsy and on medication while pregnant. Telling them about my two pregnancies while on medication.
My seizures are not under control now. Since I don’t drive, I am volunteering with a nonprofit helping with their website, fund raising, and spreading Epilepsy awareness from home.

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I have linked up with foundations in my community and help by being a voice as a constituent. I update my posts as frequently as I can sharing my experience and motivating others to share their experience. I have learned that sharing what I have learned that works for me and giving other people tips to help them strive is a great benefit. My favorite is to see people I have encouraged to speak up and have outshined me and become an even bigger influence because I know what I’ve taught them paid off.

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I’m lucky because I work with an organization in BC called Patient Voices Network, and their only focus is to engage Patients and Health Care Organizations and bring them together to improve health care. I end up in a variety of settings where I can use my Patient Advocacy skills, including committees, working groups, surveys, conferences and more.

In the same way, my Provincial Health Region, Island Health, offers a variety of ways to engage as a Patient Leader, so I’m never lacking in opportunities to get involved. My biggest problem is saying no to every engagement that interests me!! I’ve been able to participate in projects that are beyond just Provincial as well, and recently took part in a Canadian Anesthesiology Conference, giving feedback as to important research topics for them to be part of.

What I do hope to do more often is actually speak in front of large groups. More opportunities are coming…I just have to be patient.

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My advocacy work is variable across many avenues from social media marketing health awareness campaigns to taking part on panel discussions. I have a degree in glass and ceramics because I wanted to set up an art’s retreat for people that led busy lives could go and take part in varying activities. The retreat was to also include outdoor activities, cooking masterclasses etc from a team of us… not just me! Sadly, health has it’s ways of skewing things sideways and it didn’t happen.

After a few years spent working within hotel and leisure I built up many personal and interpersonal skills as well as how to run such a business. All part of my research for that retreat. However, my body couldn’t handle the work anymore and without a diagnosis, despite chasing one for 10 years, I was left on disability and very depressed. Newly married and in a dark hole. Well educated and unemployable.

I got help a few years later through pain management and counselling services and ended up back at university to get a Business Masters. I literally threw myself into it as a desperate measure to make a career for myself and passed with distinction, which was only possible if your dissertation passed with A grade. That’s how desperate I was to carve a career.

It still wasn’t enough, I was too old and disabled and companies wouldn’t entertain me so I decided to set up business instead and even entered ‘Blue-Print Awards’ and got through to the local final. I didn’t win but the whole experience really helped with confidence building. Then I was thrown back into despair as my health spiralled again. Back on the road seeking that diagnosis and back on disability.

After 20 years of chasing, now age 39, and being told nothing was wrong I was diagnosed with a rare genetic condition - ehlers danlos, with a side of fibromyalgia and all of my illnesses being attributed to the EDS. I had a business Masters and was suffering with really poor mobility and severe pain. What could I do?

I ended up after a short while becoming a fibro forum volunteer, then admin then I set up my own support group, which then turned into an online community to serve everybody because getting to meetings wasn’t an option for us all. Even me sometimes!

In a nutshell that group just kept expanding as I used my business skill-sets, natural insight, creative abilities, to nurture what I was building, It is true, and our story is in our FibroFlutters About Us pages that the network I run happened purely by accident as a result of creating a communications avenue for members.

The website is organic and grows as time moves on. Yes, there is only me working on the website, which is why expansion is slow. However, you can read in one of my latest reports about how social media has helped us to attain a fairly good centric position within the healthcare environment. It can be found on the website

There are a team of us that co-work FibroFlutters local group.

Wego convinced me that external advocacy was the way forward, I just needed the confidence and nerve to do it. Now I am advocating for patients, health, research and pharma to whichever capacity the roles require. Speaking, panels, focus groups, surveys, etc.

Now, when I read all that… and there’s loads not written here I can see how much I have done. I am always being told off for not seeing my true value, but I did have help along the way so no, it wasn’t just about me and my passion to strive.

I have already written a novel, LOL I say embarrassingly, hope you’re still awake :butterfly::purple_heart::butterfly:

Wishing you all wellness

Carole / CEO fibroflutters.com Co-F FibroFlutters

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My background is in Community Psychology, but after receiving my MA, I wasn’t sure that I was going down the correct route in my career.

I’m now using my education and experience to better understand the systemic issues within healthcare, and my passion for helping others is shining through in the patient community that we work with. I have been able to shift my focus a bit from counseling psych to helping the community.

I currently enjoy reaching out on social media through twitter and tweetchats, but we are currently working on a podcast that will bring the Pharmaceutical side of Drug Development into a more human and interpersonal light.

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I was diagnosed with juvenile arthritis in my teens, there are four sub-categories of the illness and I happen to have the one that mimics adult RA which it can lead into adulthood. (which it did for me). When I was applying to college, the illness did impact me because I was starting out on a whole new path and learning to take injections… I grew up “healthy” so this was a huge life change. However, I didn’t let JA get in the way of what I wanted to do. I always had an interest in mass media, journalism etc, from high school and before. So that naturally trickled into college and later on with what I would be doing.

I did work at corporate Walgreens for awhile and eventually did my own thing, veering off my path a bit. But after being put on disability and having a knee replacement, what I set out to do from when I was younger naturally gravitated towards me again.

I created my own blog, get paid to freelance write (which wasn’t the case in the way beginning), have been featured print newspapers and magazines, and currently working on my debut children’s book. Writing a book or any books I will be working on was always in the back of my mind but never really came to the forefront until a few years ago when I realized this is what I am meant to do as part of my life purpose. Using my media background I am also working on a film project for those living with invisible disabilities.

I would like to get involved in policy and the government side of things again as I did 10 years ago, and I’m in the next month I will be visiting with my local representative and heading to Washington D.C.!

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My background starts with a double major in finance and business management bachelor’s degree. I have an extensive business background working with Target, opening new stores throughout the Northeast from Maine to Maryland. I trained store managers in opening and maintaining new stores. After moving to Florida to take care of my mother before she passed away due to heart failure. I then started my own construction company. I owned that for 4 years. I then moved to Oklahoma and opened a full residential construction company I was also volunteering to help run a nonprofit organization that helped people who needed clothing and household supplies in Oklahoma especially after major fires and tornadoes.
When I moved back to New York I was a business manager for a concrete company. After being diagnosed with Sarcoidosis, I started my nonprofit organization called Sarcoidosis of Long Island. I started out helping people finding doctors. Then I became a government advocate first for Sarcoidosis then I moved into the rare disease community. I was part of Foundation Alliance for Global Genes, and a Community Congress Public Policy Member for RDLA. I started to do public speaking for Global Genes, RDLA and as a Patient Ambassador for Foundation for Sarcoidosis Research. I have spoke at two Congressional Briefings as well as organizing one of those briefings myself. I have also organized a Day for Rare Diseases speaking engagement with Government officials, patient advocates, and caregivers all speaking to the open public as well as doctors and nurses and medical students of Stony Brook Hospital and University.
I have always felt comfortable speaking to government officials one on one. I always wanted to be behind the scenes until my first television interview. The news station interviewer told me I have a very unique story and I needed to get that story out there to help all of those who can’t fight for themselves.
So I was asked to become an Ambassador for Illumina. They flew me and others to San Diego to take a public speaking class. After that class I felt so much more comfortable with public speaking. I have done many public speaking engagements, podcasts, radio as well as television interviews. I actually love public speaking now.

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Public speaking and community outreach are big passions of mine!

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I am an advocate for Women’s Health, but specifically Endometriosis, and Surgically Induced Menopause. I’ve discussed and shared information about endometriosis for years, but for the past year I created a brand Millennial In Menopause to discuss various women’s reproductive health issues that lead to surgical menopause due to a hysterectomy. I use social media my voice is instagram, i also have a YouTube channel, podcast, and blog. I am so excited for this journey because it really important for women to pay attention to their bodies and learn how to advocate for themselves in the doctor’s office, on the job, with insurance companies, and even family and friends.

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