caret icon Back to all discussions

What type of advocacy are you currently involved in or hoping to be?

Our community would love to learn & hear more about your advocacy efforts. Join in on the conversation!

What type of advocacy are you currently involved in or hoping to be?
- Community Awareness & Education
- Legislative Advocacy
- Digital Creator
- Healthcare Collaborator
- Other (please provide details)

How did you get started?
How long have you been advocating?
What advice do you have for someone who is just starting off or wants to explore advocacy?
What else would you like to share about your advocacy experience(s)?

  1. I've been advocating for most of my life in one way or another. I've had a "sickly" but productive life. Finding out at the age of 22 that I had endometriosis started me on the rabbit hole of trying to understand what I had and how to handle it. Fast forward and I live with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) the treatments I need are expensive and my insurance wouldn't cover them. I ended up going public with a national campaign, a little over a year ago, utilizing multiple fronts such as direct action, petitions, social media blitz, videos, etc. I have won a number of battles and continue to apply pressure in hopes of getting other people access to the care they need to live a quality life.

    I actively seek people fighting insurance denials, and prior authorization nightmares, and have been lobbying in DC for healthcare reforms and access to life-saving care.

    I work to raise awareness about Complex Regional Pain Syndrome, Small Fiber Neuropathy, and other rare illnesses that rob people of their lives while private for-profit insurance companies deny access to life-saving quality care.

    I hope to normalize the treatments that are working in that same arena such as Ketamine Infusions and LDN (Low Dose Naltrexone). Having had success in getting medical insurance coverage for ketamine infusions for myself and others. There is a lot more work to be done. LDN is still a fight to get any kind of coverage with the hope of helping more people have more choices in their care.

    I've been working with multiple organizations and am excited to learn more ways I can be effective in what has become my life's work.

    In my prior life, before Illness, I was an EMT (Emergency Medical Technician) and Licensed Nursing Assistant for just about twenty years. I served as a state representative for four years and numerous advocacy posts. Then when I became ill with breast cancer, my second cancer diagnosis, it brought on rare illness and devastating physical disabilities that ended my medical career.

    Having CRPS is hard in that it is also known as the "Suicide Disease" causing 70% of people young and old who have it to consider or succeed in ending their lives. I'm on a mission to get as many people as possible access to the care they need to live a life worth living, to reverse as many denials as possible, and to continue to be able to create positive outcomes in healthcare for as many people as possible.

    1. I talk alot about Complex Regional Pain Syndrome and Small Fiber Neuropathy. I have yet to meet another patient with Tamoxifen Retinopathy.

    2. Have you submitted a story yet? We'd love to hear you share your journey with others in our community! - Bridget (team member)

  2. I have recently started advocating for pharmacist and pharmacy technician unsafe working conditions including understaffed stores and burned out at hospital and community pharmacies.

    1. This is so important. I used to work at a national physician organization and they also shared that doctors (and all healthcare professionals) are completely overworked, burned out, and even worse. I commend you for advocating for pharmacy workers! - Bridget (team member)

  3. I developed juvenile rheumatoid arthritis with accompanying inflammatory eye disease at age 11. That was 66 years ago. My disease moved on to become full-blown rheumatoid arthritis, with Sjögren’s syndrome and interstitial cystitis. Over time a number of joints developed osteoarthritis, requiring knee replacements and other surgeries. Along the way I developed low back pain syndrome and, recently, macular degeneration. In the course of my career I was diagnosed with a refractory depression related to bipolar disorder II. The depression lasted 13 years, until the right drugs came to market. Thirty-one years later I continue to take my meds, spurred on by the fact that 2 members of my family have committed suicide.

    Now that you know my diagnoses, let me tell you about me. In my thirties I became a nurse practitioner with a minor in education with the goal of helping others to learn how to cope with arthritis. I received a 2-year fellowship from the Arthritis Foundation. My approach has always been to foster a healthy approach to chronic illness self-care, ie, a “I am not an arthritic but rather a person with arthritis.” Management of arthritis requires a mix of medical diagnosis and treatment mixed with promotion of a healthy self image. Not easy. During my professional career I received a number of awards from the Arthritis Foundation for community education activities, which included multiple speaking engagements as well as a 3-day arthritis exposition that featured workshops, lectures, and exhibits showing various products to promote independence. I had to retire early because of my physical limitations, but I still want to share my knowledge and experience with others. I offered my services as a volunteer to the Arthritis Foundation several times in between surgeries, but have thus far received no response. I would like to see whether your group can use my services.

    1. Hi , we're glad you're here. understanding, compassion, empathy, knowledge and experience are prized in our communities. We're glad you're here. I wanted to mention our sister community - If you would like to know more about contributing, you can reach out to the team there at contact@ - Warmly, Donna (team member)

  4. , I am working a couple of pathways. First, I am moving my marketing project manager (primarily digital) into healthcare lobbying and political communications. This includes identifying legislative opportunities to propose new laws based on living with chronic conditions related to T2D. Also, I will be reaching out to pharma contacts to get into consulting opportunities. Right now I am working on three websites, a professional, a future NGO and a blog. Hopefully by late next week, all three will be launched.

    1. Wow this sounds amazing. Great job on all fronts. ~Racquel~ Social Health Network Moderator

Please read our rules before posting.