Those of us living with EDS know firsthand that pain is a major issue in daily life. Since we are affected by an obscure disorder with a difficult-to-pronounce name and a complicated montage of symptoms, we find it difficult to communicate our circumstances to doctors. Let's face it, we wish the doctors knew more or somebody else could explain it to them for a change. Some of us even catch ourselves thinking: "There ought to be a law that the doctor must listen to me describe my pain and do something about it!" Thankfully, some State Senators, doctors, researchers, and patient advocates agreed to take it to the California State Capitol Building. In late January 2004, the California State Legislature designated February as Women in Pain Awareness Month.
Wednesday, February 4, was a clear bright day in Sacramento, California, not just because of the fine weather, but because Ehlers-Danlos Syndrome was discussed during a hearing on Pain. I had been invited to speak about the underdiagnosis of Ehlers-Danlos Syndrome and the consequences of a missed or late diagnosis. Also, I was asked to talk about what type of support infrastructure addresses those with EDS. In addition, organizers requested that I share my experience working to raise awareness of EDS and educate women pain patients on how to work with their physicians.
The hearing on February 4 was an informational hearing to further explore the topic of Women in Pain. It was organized in coordination with the California Legislative Women's Caucus in an attempt to gain a more thorough understanding of the issues surrounding underdiagnosis of chronic pain and the role of gender in the undertreatment of pain. There was also the question of whether or not there might be a legislative remedy to this problem.
The first panel of speakers sought to frame the issue with Personal Stories and Academic Research. Ms. Cynthia Toussaint, the founder of For Grace (www.forgrace.org
) shared her personal story of learning to live with Reflex Sympathetic Dystrophy and the journey which had brought all of us to that hearing room. (A copy of Ms. Toussaint's testimony is available by clicking here
) The validity of the topic was reinforced by academic research presented by Professor Diane Hoffmann, Associate Dean at the University of Maryland School of Law. Dr. Hoffmann is coauthor of "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain" which was first published in the Journal of Law, Medicine & Ethics in 2001.
The second panel of speakers was charged with presenting the Patient and Advocacy Perspective. Ms. Susan Matsuko Shinagawa of the Intercultural Cancer Council shared her personal story as a breast cancer survivor and chronic pain patient. Ms. Shinagawa's story moved almost everyone in the room to tears. As the second member of this panel, I explained EDS with an emphasis on the importance of pain as a diagnostic criterion for a little understood disorder. I also talked about some tips for improving the communication of pain to doctors. Additionally, I presented brief overviews of the types of support organizations that are targeted to those with EDS. (A copy of my testimony is available by clicking here
The third speaker in this panel was Dr. Kathryn Padgett of the American Academy of Pain Management. Dr. Padgett, who shared statistical information on the undertreatment of chronic pain, emphasized that prescription opioids AND a multidisciplinary approach provide much needed relief for individuals suffering pain. (A copy of Dr. Padgett's is available by clicking here
The final panel provided a thorough response from the medical community. Dr. Steven Richeimer, Director, USC Pain Management, USC Medical Center, spoke about treatment protocols. Ms. Sally A. Adelus, RN, Executive Director of Hospice in the Valley in Santa Clara County, shared examples of the types of treatment she has witnessed for pain patients. Please note that one of the patients she spoke about was an EDS patient. Dr. Scott Fishman, Chief of the Division of Pain Medicine at the UC Davis Medical Center also spoke about treatment protocols and gave examples of how patients fared in a variety of circumstances. Finally, Diana Adams EdD, Adjunct Clinical Assistant Professor, Department of Psychiatry and Behavioral Sciences at Stanford University Medical School, presented some of the history behind pain terminology and treatments. All of the speakers in this group illustrated that there are compassionate doctors out there who know a great deal about this subject and reinforced the point that there is still much to learn about pain.
Many thanks go out to Stayce Curry for her impressive efforts to spread the word about this hearing in California. As a result, hundreds of letters, emails, and phone calls were received by our Senators and Assemblymembers making them aware of the hearing. Thus, six Senators and two Assemblymembers attended the hearing on February 4. This is remarkable because an informational hearing such as this is typically sparsely attended.
By making their voices heard, our members let their Senator/Assemblymember know that this was an important issue to their constituents. Present were Senator Liz Figueroa, Senator Nell Soto,
Senator Sheila Kuehl, Senator Edward Vincent, Senator Wesley Chesbro, Senator Richard Alarcon, Assemblymember Patty Berg, and Assemblywoman Gloria Negrete McLeod. In addition, the audience gallery was completely full.
Thank you to Stayce Curry and all of our California members who let their Representatives in Sacramento know that this was an important issue for them to learn about.
Members of EDNF have learned that having our voices heard by our elected officials is a key to improving the quality of our lives. Prior efforts by our members resulted in Meg Harmon's testimony at a US Senate Health and Human Services Committee Hearing in April of 1999
. As a result of that testimony, coupled with prior and subsequent lobbying the number of NIH research projects encompassing Ehlers- Danlos Syndrome significantly increased. Now, just as then, there are many members working to keep EDS on the minds of legislators.
Thankfully, we were given the chance to do that in California in February 2004. It is hoped that as a direct result of this hearing there will be changes in the certification and/or continuing education requirement of healthcare professionals relating specifically to effective treatment of pain patients. Look for more information in future issues of Loose Connections and on this website in the coming months to see where we go from here.