My Transformation from a Life of Pain to Purpose

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

I have CRPS. The bad kind. Type 1. Full body. With Parkinson’s, severe eosinophilic asthma, mast cell activation syndrome and other nasty autoimmune diseases.

Having spent my entire career at the highest levels of healthcare, I was frustrated. I did well for myself selecting an excellent team of physicians and managing my care myself but was hopelessly overwhelmed because I could not do the same for others. And that is not for lack of trying.

I soldiered on until I realized I was fighting the wrong battle. Fighting an incurable disease that gets worse over time against an apathetic and often ruthless healthcare system and uncaring government is a dead end – literally.

An epiphany helped me to realize that fighting for a purpose changed my life. When Jim Broatch, RSDSA’s Executive Director, recruited me to chair the Advocacy Committee, it all came into focus. Instead of dreading each new day, now I cannot wait to get to work. The pain is still there. So is the fatigue. So are the limitations but they are motivations to work harder. I became a warrior with five major initiatives, and I invite you to transform your life by joining us in this important work:

  1. 1. Bringing drugs like ketamine that bankrupt so many of us or are simply out of reach today for so many on label with standard protocols so insurance will cover the cost and our pain will be better controlled. 

  1. 2. Organizing physical and virtual support groups with standards and resources available to everyone.

  1. 3. Partnering with a company at the cost of less than $100,000 to screen over 10 million people for CRPS using AI to start early treatment when it is most effective is within our grasp. It just needs funding. Let’s go and get it so we can turn ten million into 300 million

  1. 4. Launching an awareness and educational program to battle bias, ignorance, and mistreatment that so many of us face daily that resulted in a $261 million award to the Kowalski family from Johns Hopkins All Childrens Hospital in the Take Care of Maya case is just a large grant away. We need advocates to urge our community to lobby congress to fund it.

  1. 5. Getting the resources to find a cure using precision medicine. Using National Institute of Health numbers, CRPS costs over $62.7 billion annually while a potential cure is only $150 million away. The initial US House of Representatives reaction was enthusiastic. We need to bring this home as a team.

No one is going to do these things for us, but we can do them for ourselves. We overcome grinding pain and challenges every day. We can change that! Join us by transforming that pain warrior in you to fighting to lessen the pain, spare ourselves and others from bias and ignorance in the medical community through awareness and education and doing our best to find a cure. Make each day one to look forward to. Not every day will be a good day but accomplishing just one thing allows you to live a life of purpose and fulfillment.

Take your first step by contacting us at [email protected]

Our best wishes for a happier and purposeful New Year.

Jim and the Advocacy Team

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

For more information or with questions, contact Jim directly at [email protected].

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