Back to Chapter and Network Home Page Contact Information Contact:
Li Li Phone:
(313) 823-2609 E-mail:
lily2141@yahoo.com Dates of Future Meetings and Events Time: April 18, 2010, 1:30-5:00pm.
Place: Wayne State University Elliman Building
Topics: Coping with Marfan Syndrome and live a better life
Please feel free to spread this news and bring your families and friends to the meeting. We are looking forward to see you all! Current Information  |
Our Network Group meeting was held on November 8, 2009.
Present (19 people): Jim & Kym Natzke, Michelle & Ed Petry, Giuseppe Rossi, Li Li, Susan Lapham, Laura Williams, Juith Ewasuh, Jessie Causie, Angie Bidstrup, Shalease & Jordan Brown, Karen Brooks, Diane McLeod, Arthur Brooks Jr., Palma Schafer, Herschel Finman
New Attendees: Jessie Causie, Angie Bidstrup, Karen Brooks, Arthur Brooks Jr., Palma Schafer, Diane McLeod, Juith Ewasuh, Laura Williams,
Meeting discussion and sharing:
- This meeting was an open discussion where attendees shared their stories of Marfan diagnosis and events in their lives that have happened with having this diagnosis.
- One of the comments made is that it takes a special person to marry someone with Marfan syndrome and that those people in the group were happy that their family and spouses were very supportive.
- It seems that a general consensus of those persons with chronic illness feel that the medical system does not always take them seriously when they present to the ER. For example, when one person had symptoms of an aortic dissection, she took a taxi to one hospital. After not getting urgent care, she ended up going to another hospital. Another person went to a hospital and was there for 3 days in and out of conscious. Blood pressure could not be stabilized. If not for an advocate stepping up to the plate and pressing buttons to get a heart catheterization and sent to another hospital for emergent surgery he would not be here today.
- Rosemary was unable to attend the meeting however she had expressed that she has been discussing with a few of her doctors as well as other family members who are affected with another related disorder (Loeys Dietz) that there is no standard of care for those people with Marfan syndrome or Loeys Dietz. The doctors and she feel that some kind of letter a patient could carry with them from their cardiologist or other primary care for their disorder symptoms may be a good plan.
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On March 9th 2008, we met at the Complete Care Chiropractic & Wellness Clinic Center in Warren. 16 people were at the meeting. Drs. Rosemary Batanjski, Feathstone and Ms. Ross shared their alternative approaches that can facilitate us in coping with issues associated with Marfan syndrome. The Complete Care Chiropractic & Wellness Clinic Center provides chiropractic, massage, physical therapy, reflexology, reiki, yoga, pilates, naturopathy, nutrition supplements, life counseling and acupuncture. Dr. Featherstone’s talk on SCENAR (Self Controlled Energo Neuro Adaptive Regulation), a non-invasive, non-surgical, & non pharmaceutical device, was intriguing, and drew a variety of questions.
We had a great time to meet Dr. Batanjski's enthusiastic team and to catch up with each other. Our next meeting is to have a joint social activity with members at Detroit Tall Club this fall. The time and place are to be determined. 
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The Metro Detroit Marfan Network Group Meeting was held on Oct 28, 2007 at Wayne State University. 9 people attended the meeting. The highlights of our discussions are things we need to know about emergency room visit, how to prepare for a emergency room visit. Kym led the discussion. We shared our experience in helping a child to cope with scoliosis. We also told our stories of potential positive impact of hypnotherapy in helping us with our surgery, daily blood pressure control and pain management. 
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The Metro Detroit Marfan Network Group Meeting was held on June 24, 2007 at Wayne State University. 26 members (including families) attended the meeting. We first celebrated Ken Robins' birthday with good cakes, ice creams, cookies and good laughs. We also signed cards to congratulate Liz for her new baby boy and to wish Scott a speed recovery. We had a lively discussion of aorta dissection. Li Li introduced the basic concepts of aorta dissection, signs associated with ascending and descending aorta dissection, the proper image diagnosis and the differential medical treatment of ascending and descending aorta dissections. Several members (Ken, Michelle, John and Shaniece) shared their experience and lessons from their aorta dissection. We also discussed the old hypertension drug Losartan (Cozaar) in aneurysm treatment as well as the underlying action mechanisms and concerns. If you are interested, please read the article entitled Acute Aortic Dissection: Critical Diagnosis and Treatment Considerations. 
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Sharing our Marfan experience: (1-2 hours): Many of our regular attendees shared their Marfan experience and were here helping to support our new attendees. Our new attendees discussed their different experiences and symptoms they have dealt with being diagnosed with Marfan syndrome. There are many fears that our group has with regards to insurance issues, finding knowledgeable doctors and surgeons. Many people in our group are finding that insurance is a major issue in receiving proper care for their Marfan diagnosis. Those that don’t have insurance or ones that don’t have the right kind of insurance are not getting the proper tests necessary to manage their symptoms. 1 member discussed privately that laser surgery was performed on their eyes to correct their vision but expressed that this probably should not have been done on a Marfan patient. This procedure rendered them blind. 
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Jim Duncans: Hypnosis for Marfan Care workshop (induction- 1 hr, direct suggestion hypnosis – 1 hour): We welcomed & extend our thanks to James Duncan, PhD CHt, (Certified Hypnotherapist). Jim graciously offered his time to our group offering relaxation techniques using Direct Suggestion Hypnosis. Many in our group found themselves in a more relaxed state of mind after the session. Jim expressed many wonderful thoughts for our group to learn how to deal with the many challenges that are brought to light with Marfan syndrome. Sharing a few select thoughts to ponder: - Disease - is NOT illness - Illness is a lack of EASE or DIS-EASE
- Relaxation come more from the exhale when you breathe.
- More focus needs to be placed on wellness instead of illness
- Reframe your thoughts - Diagnosis is NOT ownership
- Use the words: Challenged or Diagnosed with Marfan syndrome instead of I have marfan syndrome. Challenges can be overcome.
On Nov. 16, Sunday, we had a Detroit Marfan Network Group meeting. time: 1:30-5:00pm
Place: Wayne State University 421 E. Canfield, Detroit MI 48201
Topic: Living with the Marfan syndrome: Emergency and Medical Situations
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