Making Misdiagnosis and Misunderstanding a Thing of the Past

Over the 12 years since its inception, Chronic Pain Partners has been at the forefront of raising awareness about EDS. Its mission is multi-purposed: to educate both the medical community and the public about EDS and related conditions, and to provide a support network for individuals and families affected by these often-debilitating disorders.

We’re honored to feature the long-lasting impact CPP has had celebrating May as EDS Awareness Month. Through the nonprofit’s extensive range of initiatives – including expert doctor webinars, awareness campaigns, and support groups – Chronic Pain Partners has become a lifeline for many, averaging 700 daily visitors to the site, more than 1,000 pages with over 700 posts. Its efforts to bridge the gap in knowledge and care have not only brought hope and recognition to the EDS community but have also spurred advancements in medical research and training with nursing-focused educational programs. Learn more about the impact CPP has had over the past decade. 

With a strong warrior in the lead, John Ferman, known to many as the esteemed founder of Chronic Pain Partners (CPP), has been a beacon of hope and empowerment for those affected by EDS. His journey began from a very personal connection to EDS, leading to his profound commitment to raising awareness and providing support for this often misunderstood and underdiagnosed condition. He shared his unique story here. A recent Podcast discussing his programs.

John and his daughter Deanna Hamm who has major EDS health issues, both served as co-founders and partners in developing the initial programs. The nonprofit organization is supported solely by personal funds, donations, grants and gifts. They have been connecting, educating, and normalizing an often-confusing disorder that can cause isolation and estrangement for some. Through his (and many countless volunteers, staff and Board Members listed here over the years) and their collective tireless efforts, CPP emerged as a vital resource offering not only hope – but high-impact educational materials, support networks, and advocacy for enhancing healthcare. John and his crew of advocates’ dedication has significantly enhanced the visibility of EDS over the last decade, fostering a community where individuals can find understanding, information, and a shared voice. 

Ferman’s efforts are a testament to the profound impact one individual can have in bringing about positive change in the community – one Susannah Fox describes in her new book Rebel Health as a ‘patient-led revolution in healthcare.’ 

To dearest John and family:
We are all beyond thankful for your ongoing efforts despite your own personal ailments and losses as you’ve built a proud legacy that will never end. Thanks also to the Board Members serving as volunteer pioneers changing the medical landscape including pioneers in EDS care: Linda Bluestein, MD, Jonathan Rodis, Deanna Hamm, Martha Riemenschneider, Andrea Julian, and to the lifelong efforts of Dr. Mitakides (who passed away in 2023) and Richard Riemenschneider (who passed away in 2023). Running silently behind the scenes is the CPP Media team under leadership of journalist Karina Sturm as editor-in-chief includes several team members including: Kate Schultz, Jan Groh, Susan Jackson, , Crystal Sullivan, Jackie Saa, and past volunteers and guest bloggers Christie Cox, Beth Miller, and Sarah Cook. Karina proudly advocates and leads the media team publication of the newsletter sharing critical information for more than 15,0000 subscribers today. Not one of these passionate people have asked for recognition, but a well-deserved moment of gratitude goes out to them all in honor of their dedication this May and every day. Your team of volunteers wrote this to honor your never-ending crusade, which we are thankful to be a part of. 

Highlights of recent impactful resources produced by the volunteer media team:

• EDS Types and Prevalence by Susan Jackson
• We Are Visible film by Karina Sturm
• Medical Gaslighting as a Source of Clinician-Associated Trauma  by Kate Schultz
• Win Your EDS Disability Claim: A Zebra’s Step-by-Step Basic Training Bootcamp by Christie Cox

Did You Know These CPP Fun Facts?

• The live poll on the website, “How long did it take to get diagnosed?” has had more than 9,000 unique votes and is often quoted by the media as 20+ years to receive a correct diagnosis as the voice of the community. 
• The 2016 MCAS webinar and downloadable presentation slides with Dr. Afrin is the most-viewed webinar on CPP’s entire library, with 56k views. You can also support CPP when you purchase Afrin’s book, Never Bet Against Occam to contribute to fundraising efforts.
• CPP’s directory listing of nationwide EDS support groups was established long before Facebook or Meet Ups offered a place to connect patients, caregivers, and their families. There’s also a helpful guide on how to set up an EDS support group. 
• Nurses eager to learn more can still enroll and get training on EDS with CPP’s free EDS training program despite the expiration of the CMEs accreditation.

• Patient Guides on key topics including:
  • EDS Information
  • Cervical Spine Instability
  • Mastering Doctor Appointments Successfully
  • Preventative Care for EDS
  • Dysautonomia Guide
  • MCAS Guide
  • Tethered Cord Guide
  • Ten Tips to Optimize Medical Expenses and Decode Tax Deductions
    
• The first of its kind conference, LeadEDS.com was held in 2019 to empower community patients and providers with EDS education that remains available and relevant today as the only EDS training program for creating and managing: EDS support groups, EDS Facebook groups, EDS advocacy techniques, and EDS social media.

What’s Next for CPP in 2024 & Beyond

• The patient-led revolution continues as we listen to your most requested educational needs with custom curated content. Vote for what’s important to your EDS journey in 2024 in our call for content survey. 
• We’re featuring alerts of the latest medical research published on PubMed that’s related to EDS. We will begin highlighting research reviews you should know about in the newsletters to come. 
• Coming in 2024…a refresh of the look of the website is coming, designed to be more magazine-like and dynamic. Don’t worry, CPP will retain all the rich resources you count on. 
• If you haven’t yet, stay informed and follow us on our NEW social media channels:
  • Facebook
  • Twitter/X
  • Instagram
  • YouTube

If you are thankful and inspired by the team Ferman and Sturm have assembled and want to support their future efforts, donate directly to support them and continuation of content development.