Focusing on Fibromyalgia with the NFA

Last month I had the honor of hosting the first Fibro Focus event organized by the National Fibromyalgia Association and their sponsor Pfizer Inc. The event was open to the local North San Diego community, and was attended by more than 50 people, including members of FibroHaven support group.

I was thrilled to get the opportunity to meet Lynne Matallana, founder of the NFA. We share a passion to support, educate, and raise Fibromyalgia awareness. I have looked to her example many times over the course of the last several months since beginning my blog and support group. Meeting her in person did not disappoint, and only fueled my desire to make a difference in our community as she has.

Dr. Andrew Blumenfeld of The Neurology Center was the featured speaker. He focused on Fibromyalgia as a disease of the central nervous system and gave an exceptional presentation. He faced a hungry audience with the grace of a man confident in his understanding of our complicated disease – and he does classify Fibromyalgia as a disease – not a syndrome, disorder, condition,.etc. In his estimation, a medical condition that produces disability is a disease. Then Fibromyalgia most certainly is a disease.

I have long been convinced that Fibromyalgia is a neurological disorder, and the newest research supports that it is. I asked Dr. Blumenfeld if there would eventually be some form of brain imaging test for a definitive diagnosis of Fibromyalgia, and he believes there will be. In fact the main reason he gave for there not being one currently is the cost involved. It is encouraging to know that one day – maybe soon – there will be a direct route to a diagnosis, not the “process of elimination” route we all had to take to get our diagnosis.

The evening was a great success. I received so many comments of appreciation from the audience. It reinforced my belief that we do not take our diagnosis in stride; that we are all looking for answers; that we want to feel supported and understood; and that we want to be well. I appreciate the NFA asking me to take part in their Fibro Focus series and am very excited to be able to share with you the information on the next six Fibro Focus events scheduled around the country.

Fibro Focus Colorado

Date: September 19, 2009, 5:00PM.

Contact: Lannette Johnson, lannette@colofibro.org, 303.847.3421

Location: Pinaacle Events Center, 1001 W 84th Ave, Federal Heights, CO

Fibro Focus Illinois

Date: September 22, 2009, 7:00PM

Contact: Diane, dabulls@gmail.com, 847.895.9596

Location: Schaumburg Township Building, 1 Illinois Blvd., Hoffman Estates (Chicago), IL

Fibro Focus New York

Date: October, 1 2009, 6:30PM

Contact: Kathy Zabliski, kzabliski@verizon.net, 315.946.4498

Location: Thompson Hospital Simulator Room, 350 Parrish St., Canadaigua, NY

Fibro Focus Pennsylvania

Date: October 6, 2009, 7:00PM

Contact: Tennille Morrow, paws_rule@comcast.net

Location: Lancaster General Health Campus, 3rd Floor Conference Room, 2100 Harrisburg Pike, Lancaster, PA

Fibro Focus North Carolina

Date: October 19, 2009 – time TBD

Contact: Cathy McCarthy, Triangle Positive Energy Fibromyalgia Group, csuspect@mindspring.com, 919.489.5316

Location: Triangle Region, North Carolina

Fibro Focus Michigan

Date: November 12, 2009, 1:00PM

Contact: Ruthann Bruce, arubobb@wideopenwest.com, 734.981.2519

Location: Merriman Rd Baptist Church, 2055 Merriman Rd., Garden City, MI

Are any of these events near you? I hope so. It will be well worth the investment of your time to attend. You will be amongst friends, find people who understand, and learn from a Fibromyalgia literate doctor from your community.

I would like to give special thanks to Megan at the NFA for all her behind the scene organizing of the event, and for the photos you see above. And also to Pfizer’s marketing team, Liz and Katie from Weiss Comm, for all the hard work they did. It was a joy working with all of you. Best of luck on your future Fibro Focus events.