Los Angeles and Orange County Local Network Group
Back to Chapter and Network Home Page Meet our Network Group Leaders 
Roelina Berst (co-chair)
with husband Chuck in the background
Regine Wood-Bluestein (co-chair)
Lisa Jeffries (co-chair) Contact Information Contact: Roelina Berst
Phone: (310) 476-6190
E-mail: roelinab@roadrunner.com Contact: Regine Wood-Bluestein
Phone: (310) 391-4453
E-mail: Reginew33@aol.com Contact: Lisa Jeffries
Phone: (714)429-0753
E-mail: lisajeffries@me.com Description of the Group The Los Angeles and Orange County Local Network serves southern California. We usually meet once a year for a social/educational gathering, featuring a guest speaker. New members are always welcome. Past meetings have featured Dr. Robert J. Siegel, Director of Cedars-Sinai Cardiac Noninvasive Laboratory, Dr. David Rimoin, Chairman, Medical Genetics Institute Cedars-Sinai, Dr. Kevin Miller, UCLA Professor of Ophthalmology, Joseph K. Perloff, MD, Professor of Medicine & Pediatrics and Founder of the UCLA Ahmanson Adult Congenital Heart Disease Center, Gergory Perens, MD, Pediatric Cardiologist at Mattel Children’s Hospital, UCLA, and Pamela D. Miner, RN, MN, NP: Nurse Practitioner at the UCLA Ahmanson Adult Congenital Heart Disease Center. Meeting Location Annual Luncheon: Sunday, October 17, 2010, UCLA Faculty Center. Program will feature a panel of Marfan Syndrome specialists from Kaiser Permanente. For further info, please contact: 310-476-6190 or 310-779-8206. Dates of Future Meetings and Events Announcements MARFLIX: The Marflix library contains Marfan related educational films, for adults and children, and in Spanish too! Borrowing from MARFLIX is easy. Simply phone or send an email with the item you’d like: Suzanne Bowman, 661/513-0683 qbbowman@hotmail.com www.CampdelCorazon.org Camp del Corazon is a non-profit organization that provides year-round experiential opportunities for children faced with the challenges of growing up and living with heart disease. Los Angeles & Orange County Network
Luncheon
Sunday, September 13, 2009
UCLA Faculty Club
Luncheon Sponsors: Roelina & Chuck Berst, Albert & Rita Harris and Regine & Jerry Bluestein.
Guest speakers:
• Joseph K. Perloff, MD, Professor or Medicine and Pediatrics and Founder of the UCLA Ahmanson Adult Congenital Heart Disease Center.
• Gergory Perens, MD, Pediatric Cardiologist at Mattel Children’s Hospital, UCLA
• Pamela D. Miner, RN, MN, NP: Nurse Practitioner at the UCLA Ahmanson Adult Congenital Heart Disease Center
Dr. Perloff gave a history of Marfan Syndrome. He stated that The UCLA Ahmanson Adult Congenital Heart Disease Center has established a Marfan Registry within its facility since they see so many Marfan patients. Perloff stated that Marfan is an inheritable connective tissue disorder affecting one in 5,000 people. Statistically, 50% of children of a Marfan affected parent inherit the disorder. Some significant work on retarding growth factor TGB1 was reported in the most recent edition of Circulation; this factor retards connective tissue growth and so can help ameliorate some Marfan symptoms. More than 500 generic mutations, traceable by family, have been identified as associated with Marfan syndrome; to some extent the diagnosis of Marfan is a combination of genetic and clinical evidence; position of the lenses of the eye are a key identifier to differentiate it from other conditions.
Pamela Miner mentioned that diagnosis is with ECHO/TTE and or MRI/CT scans. What to do “Beyond Pills”:
- Regain control over your own health status through education, participation in medical management decisions and lowering stress
- Avoid “bad” coping behaviors: denial, substances (tobacco, alcohol, etc) and poor health habits
- Be aware of your psychological state; reduce stress
- Look into complimentary medicine: Eastern medical practices and mind/body healing practices like Yoga.
Dr. Perens works directly with pediatric patients and in cooperation with geneticists in the clinic. At times, a diagnosis in very young patients is difficult; definitive diagnosis may have to wait until puberty. When a diagnosis is made, siblings should be tested and examined as well. He mentioned:
- 30% of Marfan patients have no genetic history to suggest the condition
- Referral should be for eye and orthopedic conditions
- Genetic testing can be offered
Questions and Answers:
• Are there false positives/negatives with genetic testing? Combined with physical symptoms, genetic testing is “99% accurate.”
• Is dural ectasia a hallmark of Marfan? It is, and one of those attending shared a success story with extensive surgery for this condition, a surgery that enabled her to walk again.
Michele Cripps of the Tall Club of Orange County encouraged all to participate in their fund-raising activities for NMF, including a proposed dinner dance in October, and the next Casino Night on April 24, 2010. Contact Michele at 310-527-7233 for info. The last Casino Night netted $9500 for NMF !!
Suzanne Bowman runs the Marflix library. Contact her for RENT, for educational films and for a CD rom created for school nurses.
Lisa Jeffries had an incredible experience using RENT as a springboard for Marfan education of teens and encourages others to do likewise.
Jerry Bluestein is looking for 25 volunteers to make calls encouraging people to become members of NMF; people volunteered.
A new program called “Saturdays with Santino” was created by a Network member to help teens trying to come to terms with Marfan. Submitted by Miriam Hearn
Event photos by Julie Schlosser
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