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Detroit Network Group
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Contact: E-mail: Dates of Future Meetings and Events Time: Sunday, December 5, 2010, 1:30-5:00pm Click here to view the inviation flyer.
Detroit Marfan Network Support Meeting Held on: April 18, 2010
There are three new Marfan members and their families came to this meeting. We spent most time sharing our Marfan episodes and various medical treatments since the diagnosis of Marfan syndrome. It was a rich experience with mixed emotions: many Marfan related episodes and lessons were shared at the meeting. We also discussed our participation in the “Patients as Teachers Program” of the 1st year medical students’ Clinic Day in Wayne State University. Six people from our group volunteered to share our own Marfan stories with the future doctors on April 21, 2010. While each of our members have various attributes and comments to make about our Marfan journey, it is apparent that there is much more to learn about the syndrome as there are so many variables, putting reins on every aspect from every member would be near impossible.While members are sharing their stories a couple of things are seemingly apparent. 1. A couple of members said that during their youth a Marfan diagnosis was not given due to the fact there was not enough information about Marfan syndrome, as most of the medical journals had one paragraph about the subject. 2. It is a constant trial and tribulation to find doctors that have a good understanding of Marfan syndrome or will take the time to listen to their patients with the diagnosis to see the many faces that Marfan syndrome presents with. Announcements: For those people that may be interested in home PT/INR service Next Meeting: Coping with chronic illness, it is wise to know how to prepare for the legal forms in case of medical emergency. Mr. Burns will introduce to us legal forms such as medical power of attorney, dural power of attorney and other forms that may be necessary. Speaker: Attorney Jeff M. Burns (invited by Kym Natzke)
Our Network Group meeting was held on November 8, 2009.
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. 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.
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.
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.
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.
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:
On Nov. 16, Sunday, we had a Detroit Marfan Network Group meeting. time: 1:30-5:00pm |
