“5 Ti ps for Managing Persistent Pain”

1. “5 Tips for Managing Persistent Pain” Presented by Linda Stapleford Bluestein, M.D. Hosted by EDS Wisconsin, Inc.

2. This event was made possible by these generous supporters. Thank you!

3. In-Person Event Agenda 5:30 – 6:30 Meet and Greet, Refreshments and Slideshow by EDS Wisconsin, Inc. 6:30 – 6:35 Introductions by Steve Swierczynski of EDS Wisconsin, Inc., and Heather Kapitz of Priority Physical Therapy 6:35 – 7:20 Presentation 7:20 – 7:30 Q & A with Dr. Bluestein 7:40 Raffle Drawing for attendees

4. DISCLAIMER This site and all information contained within it is for educational purposes. All contributors, including EDS Wisconsin, Inc., Linda Bluestein, Tammy Kosbab, Steve Swierczynski, TsilosSchoener, EDS Wellness, EDS Network CARES, and others cannot be held responsible for misinformation, misconduct or malpractice. Information provided is not a substitution for medical care or advice.

5. Who is EDS Wisconsin, Inc.? • Organized in April 2017 • Our Mission is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. • Seeking 501(c)(3) Charitable Tax Status • Tax Exempt Donations Accepted through 6/22/17 through our Affiliated Partner: EDS Wellness • Seeking Volunteers & Donors

6. Who is EDS Wisconsin, Inc.? • Tammy Kosbab, President • Diagnosed with what is formerly known as “Type 2” EDS in 2009. Suspected as Classical Type based on new criteria. • Attended 2011 and 2012 EDNF Conferences • Attended 2016 Ehlers Danlos Society Global Learning Conference • Attended 2017 EDS Wellness’ “Wellapalooza” Integrative Health and Wellness Conference • Creator and Administrator for Ehlers-Danlos & Joint Hypermobility of Facebook, which currently has over 600 members • Graduated magna cum laude with a Bachelor’s degree in Healthcare Management • Elected to the Board of Directors for Ehlers-Danlos Network CARES in October, 2016. • Former Entrepreneur and Salon Owner for over 9 years.

7. Who is EDS Wisconsin, Inc.? • Steve Swierczynski, Treasurer • Successful entrepreneur: Fishing Hot Spots, Inc., Fishidy, EDS Wisconsin, and others. • UW-Madison • Personal and passionate connection to EDS • Family oriented • Served on numerous Boards and Committees in business and educational settings • TsilosSchoener, Secretary • Diagnosed with Undifferentiated Connective Tissue Disorder, and related conditions Sjogren’s & Psoriatic Arthritis Mutilans • Graduated with Juris Doctorate degree in 2007 from UW Madison Law School • Owner of Subwiches restaurant • Family members diagnosed with EDS • Graduated with double majors from UW Milwaukee with Honors

8. Signs and Symptoms of EDS Joints: – Joint hypermobility (I.e., Joints that move outside the normal range of motion. However, joint hypermobility is not always apparent in all joints, such as the pelvis). – Loose/unstable joints (I.e., Causing clumsiness, lack of innate sense of balance or coordination, ankle instability, shoulders that seem to roll forward & more). – Prone to dislocations and subluxations – Joint pain – Early onset of osteoarthritis. Skin: – Bruises easily – Fragile skin (I.e. tears easily) – Stretch Marks – Soft velvet-like skin – Skin hyperextensibility (can be stretched and then seems to snap back into position) – Severe or unusual scarring – Poor wound healing or wounds heal slowly – Molluscoid Pseudo Tumors (fleshy lesions associated with scars over pressure areas, such as knees and elbows) Copied from: http://edswellness.org/2016/05/01/signs-and-symptoms-of-eds/

9. A BIG Thank You to our Volunteers for helping make this event possible! Sally Jolles Joe Jolles Vanessa Block Hunter Stark Kailee Knudsen Kim Witz Sean Witz Tracey Romanowski

10. Watch for Possible Future Presentations by EDS Wisconsin: Mast Cell Activation Disorder Practical Solutions for EDS and related conditions Communication in the Exam Room for patients and medical professionals Q & A with Dr. Bluestein How to advocate for your EDS or special needs child Self Care for Chronic Pain Mindfulness for EDS and related conditions Yoga and Hypermobility Other? What would you like to see for a future presentation? Please share your thoughts on the feedback form and let us know if you’re interested in working with EDS Wisconsin. Thank you!

11. Dr. Bluestein’s Personal and Professional Medical Resource List Vera Bocoun, MD 2727 Plaza Drive Wausau, WI  54401 Irwin Goldstein, MD 5555 Reservoir Drive, Suite 300 San Diego, CA 92120 Timothy Romang, MD 3200 Westhill Drive, Suite 200 Wausau, WI  54401 Daniel Clauw, Professor of Anesthesiology University of Michigan 24 Frank Lloyd Wright Dr, Ann Arbor, MI 48105 (734) 647-5900 John Rowlingsonton, MD University of Virginia P.O. Box 800710 Charlottesville, VA 22908 434.924.2283 Renee Caswell, MD Mayo Clinic 13400 E. Shea Blvd. Scottsdale, AZ 85259 Kris Fergusson, MD 400 Westwood Dr #200 Wausau, WI 54401 (888) 901-7246 Diane Durante, OT Weston, WI 54476 715-432-9399 Tracy L Radke, OTR 3200 Westhill Drive, Suite 100 Wausau, WI 54401 Brad Beilke, PT 3200 Westhill Drive, Suite 100 Wausau, WI 54401 Frank Feigenbaum, MD Current address 9080 Harry Hines Blvd, Ste 220 Dallas, TX  75235 Steve Benson, PhD Psychologist 500 3rd St # 319-B, Wausau, WI 54401 (715) 848-0002 Michael Umland, MD 212 Sturgeon Eddy Rd Wausau, WI 54403 Heather Kapitz, MPT Priority Physical Therapy, Inc. 413 N. 17th Avenue Suite 100 Wausau, WI 54401 Wayne Brearley, MD 3200 WesthillDr # 201  Wausau, WI 54401 Tim Lamer, MD Mayo Clinic 200 First Street SW Rochester, MN  55905 *Disclaimer: This list is based on the personal opinions and personal experiences. All contributors, including EDS Wisconsin, Inc., Linda Bluestein, Tammy Kosbab, Steve Swierczynski, TsilosSchoener, EDS Wellness, EDS Network CARES, and anyone else providing names cannot be held responsible for misconduct or malpractice by these physicians.