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2011 01 sleep mailing
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Central Ohio Sleep Disorders Support Group
c.o. 961 Farnham Road, Columbus, OH 43220
Anyone is welcome to attend our meetings. We are an informal patient support group of people with various sleep disorders that started meeting in 1986. We exist to help each other and anyone interested in learning more about sleep through educational materials, guest speakers, referrals to community services, suggested readings, contact with national organizations, and most importantly, support among our members. Please feel free to contact any of the people listed on this announcement if you have questions or concerns.
Our traditional meeting time is from 2:00-4:00 pm on the THIRD Sunday of the month. Recently we have been meeting quarterly at Riverside with occasional meetings at other locations. With the New Year, though, come new possibilities.
WE WILL BE MEETING EVERY OTHER MONTH AT RIVERSIDE THIS YEAR. TURN THE PAGE FOR A FULL SCHEDULE OF SPEAKERS. Thanks to Jennifer at OhioHealth Sleep Services who set up the schedule and will be supporting us in our activities this year.
Please join us for our meeting Sunday, January 16 from 2-4pm
@ The Elizabeth Blackwell Center
In the first hour, Jeff Karamol, respiratory therapist with OhioHealth Homereach
will talk with us about PAP masks and mask fit.
In the second hour, we will support each other through group discussion.
The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
DIRECTIONS: Riverside Methodist Hospital is located in northwest Columbus at the corner of W. North Broadway and Olentangy River Road, with exits from the north and south off of State Route 315. The Elizabeth Blackwell Center is just north of the hospital on the west side of Olentangy River Road, near the Riverside Health Center and Kobacker House. Visitor parking is free and is just to the left and also behind the Center.
DR. EMMANUEL MIGNOT
It was a very special occasion for the people with narcolepsy who were able to hear Dr. Mignot speak on November 6, 2010. He is the chief researcher in the United States working on unlocking the puzzle as to the causes of narcolepsy. We are grateful to the Drs. Schmidt who brought him to Columbus.
In 2000, Dr. Mignot and his team of researchers, working with narcoleptic dogs at the Center for Narcolepsy Research at Stanford University, were instrumental in discovering that most people with narcolepsy lack the neurotransmitter hypocretin. Hypocretin stimulates the brain to stay awake. It has been determined since then that HLA DQB1*0602 is the primary gene involved in the development of narcolepsy. It is almost a certainty that narcolepsy is an autoimmune disease (a disease where one's body attacks its own cells.) Dr. Mignot explained that he believes something causes the bodies of some of the people who have that particular gene to think that hypocretin is a virus and attack it. Several pharmaceutical companies are now trying to manufacture hypocretin. That could be a big step towards more effective treatment of narcolepsy.
The cause of narcolepsy is more complex than that, though. For one thing, most people with that gene never get narcolepsy. It is now believed that narcolepsy is caused by the interaction of several different genes with a variety of poorly understood environmental factors. For instance, regarding the environmental factors, Dr. Mignot said that he has met several children who have developed narcolepsy shortly after having a staph infection.
Dr. Mignot showed us a graph analyzing the blood of people with narcolepsy. There was a big spike up of HLA DQB. There were smaller spikes, though, of other genes that have yet to be identified and surely play some role.
A method of combining blood samples from many different individuals has recently been developed. By using this method, it will now be possible to combine blood samples of many people with narcolepsy to see what other genes we have in common. That is why it is so important to collect blood samples from as many people with narcolepsy as possible. If you haven't yet participated, you are urged to do so. Contact Mali Einen, the research coordinator at Stanford. You can e-mail her at HYPERLINK "mailto:einen@...
or call her at 650-721-7550. She will send you a kit that includes a long questionnaire to be filled out and the equipment you need to take to a lab to get the blood work done. It's a very concrete way to make a contribution to a cause that is very personal to each of us who has narcolepsy. We can be part of the solution!
Brains Also Needed!
Dr. Mignot also spoke about how much invaluable information they have gained from the brains of people with narcolepsy who have willed their brains to the Stanford Brain Donation Program. The brains are being used to understand the process of the autoimmune attack against hypocretin (which takes place in the brain). They can also study the hypocretin system at the molecular and pharmacological level, with the goal of finding new treatments. I have a copy of the donor packet, if you would like to look at it. There are forms that must be filled in completely. When they receive the forms they will send information to you for your doctor and others that you list in the form. Then they will contact you about twice a year to update your medical history. You are free to withdraw consent at any time. If you have questions, contact Mali Einen.
If you go to the website http://www-med.Stanford.EDU/school/psychiatry/narcolepsy
you will find information about narcolepsy and the research going on at Stanford. There is even a link to a video made by the Discovery Channel that shows Dr. Mignot and his narcoleptic dog named Bear.
For a person with narcolepsy, it's very exciting to see all of the progress being made in discovering its cause and treatment. Dr. Mignot struck me as being as tenacious as a bulldog. He's got this problem between his teeth and he's not going to let go until he finds the solution! That's why it's an especially good time to join Narcolepsy Network. Their newsletter is an excellent way to keep up-to-date on the most recent discoveries. To join, contact them through www.narcolepsynetwork.org or call toll free 888-292-6522. The individual membership fee is $35 with the memberships running Jan.-Dec.
written by Ellen Haider
DR. HELMUT SCHMIDT
The sudden passing of Dr. Helmut Schmidt on October 20, 2010 at the age of 71 came not only as a shock to all that knew him, but also with deepest sorrow. I know that many people around the world felt the loss of Dr. Schmidt, as he was known for his dedication and was often referred to as a "Pioneer in Sleep Medicine".
I remember the first time I heard about the field of Sleep Medicine in the early 1990's. Dr. Schmidt, who opened one of the first sleep disorders centers in the country at The Ohio State University Medical Center in 1975 and founded the Ohio Sleep Medicine Institute in Dublin in 1990, was the guest on a radio talk program. Listening to the discussion, I realized that after 15 years I no longer had to go through the daily struggles associated with all those weird symptoms of what I would soon find out was narcolepsy. Finally, here was a professional who could help me when no one else could. I immediately called to make an appointment.
Promoting research, providing training, and educating patients and the general public were important to Dr. Schmidt. One example of how he accomplished this is the annual "Keynote Symposium: Sleep Medicine" which he started in 1992. It provides an opportunity for healthcare professionals to learn from each other about the latest research.
Dr. Schmidt was involved in so many professional organizations that one might wonder how he was able to maintain a practice. I think it's because he was motivated by his dedication to his patients. I'll never forget the times he became my advocate with my insurance company. He cared about each patient, respected each one as an individual, and knew that they would receive the benefits of his efforts. Above all, he believed that each patient deserved to experience quality in their lives.
I consider myself fortunate to have been one of Dr. Schmidt's patients. He always seemed to know what I neededfrom a change in medications to words of encouragement, a pep talk, a boost in confidence, reassurance. I can still see the twinkle in his eye that reflected his sense of humor and his warm smile that radiated his caring and welcoming spirit.
Dr. Schmidt will be greatly missed by his family, friends, colleagues, and patients like me. In this time of sorrow, we need to remember and celebrate his accomplishments and influence on all of us. We are blessed to have known and experienced him in our lives.
written by Karen Milhoan
2011 MEETING SCHEDULE mark your calendars now!
January 16: Jeff Karamol, RRT, OhioHealth Homereach - Topic: PAP Masks & Mask Fit
March 20: John Eickholt, MD, ABPN, ABSM - Topic: Conquering Insomnia Through Cognitive Behavioral Therapy and Mental Training
April 17: possible meeting with Markus Schmidt, MD, Ohio Sleep Medicine Institute
May 15: Ray Sheridan, DDS - Topic: Dental Sleep Medicine
July 17: Erica Harris, BS, RPSGT - Topic: Understanding Sleep Studies From the Sleep Technologist's Perspective
August 21: Picnic at Whetstone Park, 5:00-7:00pm
September 18: Group Discussion
November 20: Richard Irene, MD, ABO - Topic: Surgical Solutions for Sleep Disorders
WE ENCOURAGE OUR MEMBERS to join the national organizations that address their individual concerns. It's an excellent way to keep up-to-date on recent developments in that field.
American Sleep Apnea Association 202-293-3650 www.apneasupport.org
Narcolepsy Network 888-292-6522 www.narcolepsynetwork.org
Restless Legs Syndrome Foundation 507-287-6465 www.rls.org
National Fibromyalgia Association 714-921-0150 www.fmaware.org
STEERING COMMITTEE VOLUNTEERS
Ellen Haider has narcolepsy. 614-459-0945 E-mail: ellenhaider@...
Laura Evert has narcolepsy. 614-784-8823
Mary Anderson has sleep apnea. 614-794-3060
Harvey Newpoff has sleep apnea. E-mail: northcompany2@...
Tanya Biesecker has sleep apnea. 614-262-7773
TO BE ADDED TO OR REMOVED FROM OUR US POSTAL MAILING LIST CONTACT
Ellen Haider, keeper of the mailing list, 614-459-0945, ellenhaider@...
TO BE ADDED TO OR REMOVED FROM OUR E-MAIL LIST THROUGH YAHOO GROUPS CONTACT HYPERLINK "http://health.groups.yahoo.com/group/centralohiosleepdisorders" http://health.groups.yahoo.com/group/centralohiosleepdisorders
Thanks to OhioHealth Sleep Services for making the copies of this newsletter.