PATIENT ADVOCACY & HEALTH ADVOCACY

MY JOURNEY WITH PATIENT ADVOCACY

My advocacy journey started in 2009. I have been blogging since 2007, but didn’t receive my first diagnosis in Taiwan until 2009. After suffering since my early 20s, I found out I had what was then known as Ankylosing Spondylitis, which is now referred to as Axial Spondyloarthritis.

Taiwan does not have health organizations that operate in the same way as Western health organizations. My goal is to let other patients here in Taiwan and in Asia know that they are not alone.

My goal is to help other English speaking patients find help and support. I got into patient advocacy by writing about my own difficulties in finding a doctor to help me in Taiwan.

I was eventually successful, but it took a long time to figure out how to find the right doctor, where to go, and what was available to me here as a Canadian in Taiwan. This made me realize that other patients were going through the same thing. I could offer my own patient experience as advice for where to go and what kind of things are available in English here in Taiwan.

Navigating a health care system in a second language is a challenge!

I began blogging about health care and health advocacy in Taiwan in 2009 after realizing there was a gap and a need for information in English for newly diagnosed patients.

Since starting this project, I’ve connected with hundreds of patients in Taiwan and Asia. I was (and still am) the only non-Taiwanese patient leader who is advocating from Taiwan and who is involved with international organizations of varying kinds. My global team of walkers called The Walking Spondies, which is centered in Taiwan, has been walking for awareness since 2013.

We’ve been walking officially since 2014 to raise awareness for Ankylosing Spondylitis with Walk AS One. Our goal each year is to walk, raise awareness, and to reach people around the world to let them know that AS, which is now known as Axial Spondyloarthritis or axSpA, is not a rare disease.

In 2014, I started blogging regularly about fibromyalgia and MECFS. Since I’ve started sharing and providing information in English, many patients have asked me where they can go for help and what kinds of support they can receive in Asia.

“I believe that patient advocates are the key to better healthcare for all. Advocates provide knowledge, support, comfort, and empowerment to patients during challenging times. Patients deserve people with lived experience in their corner, especially in today’s world where complex healthcare systems are the norm. You do not need to suffer alone.’ ~Carrie Kellenberger

TAIWAN LEGISLATIVE HEALTH ADVOCACY

We’ve spent 20 years here, building communities and families; working side by side with Taiwanese friends, and volunteering for all residents of Taiwan.

In March 2023, I became part of a small task force and partnered with Crossroads Taiwan to petition the Taiwan government to include immigrants to Taiwan in our social health and welfare program. At that time, these services are only available to Taiwanese. We were able to change the law to include foreigners in September 2023. However, none of the patients representes in our petition have been able to access disability services in Taiwan as of January 2024 .

As a resident of Taiwan, Taiwanese business owner, and a tax paying citizen it was outrageous to learn I do not qualify for disability services in Taiwan because I’m not Taiwanese. Many immigrants in Taiwan are lifers. Yet I do not qualify for any kind of assistance when I most need it! Not even a parking pass.

I’ve lived with severe and progressively disabling disease since 2009. I live locked in my home now as I’m never well enough to go out. We have a lot more work to do in 2024.

Knowing that my story has reached people and that it helps others through difficult times in their own lives gives me peace of mind. I’m grateful anytime I receive a message from another patient or caregiver telling me how my words have helped them.


PATIENT ADVOCACY & HEALTH ADVOCACY: "Working together – patients, caregivers, medical professionals, and healthcare companies – means better healthcare for all." ~Carrie Kellenberger Share on X

I still have a voice. While I can’t walk anymore and find it very hard to attend large meetings or travel, I can still speak. I use my platforms to assist disabled and chronically ill immigrants here who cannot speak or advocate for themselves.

MY SEVERAL WORLDS AWARDS

Over the past 15 years, my work has been recognized, nominated for, and won many health awards. My patient advocacy work has been recognized for:

  1. Legacy Award Winner 2022 – Support Fibromyalgia Network
  2. Lifetime Achievement Award FINALIST 2020 – WEGO Health
  3. Best Fibromyalgia Blog – Healthline
  4. Top Ankylosing Spondylitis Blog – VeryWell Health
  5. Top Chronic Illness Blog
  6. Patient Leader Hero Nominee
  7. Best in Show: Blog Nominee
  8. Advocating For Another – Nominee The foundation of my work with My Several Worlds is assisting other chronically ill patients in Taiwan and Asia.
  9. Best in Show: Community Nominee
  10. Best Kept Secret Nominee
  11. Best in Show: Facebook Nominee
  12. Best in Show: Instagram Nominee
  13. Best in Show: Twitter Nominee
  14. Healthcare Collaborator Nominee
  15. Rookie of the Year Nominee
  16. Hilarious Patient Leader Nominee

LEAVE A REVIEW FOR MY HEALTH ADVOCACY

Reviews are an integral part of an advocate’s work, so please consider taking a few minutes to visit one of the links above to let others know what I’m doing. Your reviews help me reach even more patients around the world who are looking for advice or a friendly ear to help them through their own health journey.

If I’ve made a difference in your health journey, please consider leaving a review of my work on these platforms:

WHAT MY COMMUNITY SAYS ABOUT ME

WEGO Health Awards 2020 FINALIST - Lifetime Achievement Award - Carrie Kellenberger, My Several Worlds
2020 WEGO Health FINALIST for
Lifetime Achievement Award

ANNUAL WEGO HEALTH AWARDS 2020 PATIENT ADVOCACY

I was one of six finalists for Lifetime Achievement Award in 2020 thanks to members of my community who endorsed my hard work and commitment to raising awareness about axSpA, Fibromyalgia, and MECFS.


Learn more:


MY GOALS FOR THE FUTURE WITH PATIENT ADVOCACY

If you’re looking for friendship and support from people who understand what you’re going though and you’re living with AS and/or fibromyalgia, I run several support groups that you might be interested in,, One of them is my private Facebook support group for women living with AS and fibromyalgia. It’s a safe place to connect with other women.

If you’re here for some other reason, I can point you in the right direction for health information. I’m here for you.

Thank you so much to everyone who took the time to write about my advocacy work and to those of you who have nominated and endorsed my work over the past 15 years.

Chronically yours,

Carrie, MySeveralWorlds.com

Carrie Kellenberger in Taiwan