Back to Chapter and Network Home Page
Contact Information
Contact: Li Li
E-mail: lily2141@yahoo.com
Dates of Future Meetings and Events
Sunday, April 22, 2012, 1:30pm: Is Your Diet Your "Friend or Foe"? (details)
Current Information
November 6, 2011
Topic: Sharing Your Coping Experience On Marfan Syndrome
Attendees: Steve & Lisa, AJ & Karen, Giuseppe, Li, Richard & Jessie, Angie, Donny, Angelia, Katie, Hershel, Margie, Jasmine, Linda & Joe, Liz & Jacob, Kym & Jim, and Cuddles.
Minutes:
I. Announcements
It was great to see several new faces as well as familiar ones.
II. Discussion
- This meeting was an open forum where all those present could discuss therapies that have worked for them as well as asking others what has worked well for them.
- Katie, a genetics counseling student at Wayne State University, is seeking topics for her masters degree research thesis. She is interested in the transition of adolescent to adult medical care. Many of the attendees were diagnosed at a young age. A few mentioned that it was difficult for them as they were not able to do things that other children their ages were able to do. Some of them even were bullied, compounding their already not fitting into society stigma.
- One of the attendees mentioned that they were diagnosed in 1991 and all of the doctors told him that he needed to get out of town as no one was able to treat him. However, they were able to secure medical treatment without difficulty. This goes to show that although we may not think that medicine has come a long way in ten years, that a significant impact has been made to the better understanding of Marfan syndrome in most communities.
- Marfan syndrome is now on the Wayne State medical student exam, which is a positive for those who are not currently diagnosed. Knowing that the medical students are being taught signs to look for and the variable ways in which MFS presents itself will be a valuable and hopefully life saving instrument for future diagnosis and care.
- Jesse shared her knowledge on an alternative innovative procedure called EARS (External Aortic Root Support) to current aneurysm repair surgery. A discussion started with regards to the procedure. Click here and here for more information about the EARS procedure. Please feel free to contact Jesse at jessebell85@yahoo.com if you want to know more about this potentially effective procedure.
April 20, 2011
Detroit Network Group members Mark Crowley, Jordan Brown, Shalease Brown, James Natzke, Kim Kotts and Li Li participated in the "Patients As Teachers" program at Wayne State University. In this program, patients play a role as teachers for the first and second year medical students. We took this opportunity to share our Marfan experiences with future doctors. 14 year old Jordan Brown, accompanied by his mom Shalease and brother Anthony, impressed those medical students with his knowledge of Marfan syndrome and his humor. All the students appreciated this special medical education.
December 5, 2010
Speaker: Jeff Burns, Attorney
Attendees: Jim and Kym Natzke; Shalease and Jordan Brown; Li Li; Guiseppe, Michelle and Ed Petry; Mark Crowley; Scott Allen; Steve and Lisa Moss
Minutes:
1. Discussion
* Living Trusts
* How an inheritance affects your government benefits (SSI/SSDI)
* Patient Advocate - avoiding a judge making decisions for you
* General Power of Attorney
* Special Needs Trusts
2. Important Forms To Have On File While You Are Alive
* General Power of Attorney
* Patient Advocate
3. What Is The Difference Between A Special Needs Trust And A Living Trust?
* A Special Needs Trust ensures that beneficiaries who are disabled or mentally ill can enjoy the use of property held for their benefit. Such trusts may also avoid beneficiaries losing access to essential government benefits.
* A Living Trust is set up during a person's lifetime to safeguard financial privacy and set up long-term property management. It also regulates the use of assets if the owner should become incapacitated, among other reasons.
Attorney Jeff Burns answered a variety of questions in order to help us better understand how to tailor trusts, powers of attorney and patient advocate forms to the specific needs of each person or family.
April 21, 2010
The Detroit Network Group participated in the "Patients as Teachers" program at Wayne State University School of Medicine on April 21, 2010. In this program, patients play a role as teachers for first and second year medical students. Seven members of our group volunteered for this activity. We took the opportunity to share our Marfan experience with future doctors. For almost all of the medical students, this was their first encounter with Marfan patients. We shared our stories, family history, Marfan features and Marfan-related medical episodes. All of the students appreciated this special medical education. We enjoyed our teaching roles as some of the students may become the doctors who will be taking care of us in the future.
 |
Participants in Patients as Teachers program at Wayne State University:
(Standing, L-R) Liz Underwood, Li Li, Kim Kotts, Herschel Finman
(Seated, L-R) Jim Natzke, Gerri Ryan
(Not In Picture) Ferris Haddad |
Detroit Marfan Network Support Meeting
Held on: April 18, 2010
Location: Wayne State University, Elliman Bulding
12 Attendees: Giuseppe, Scott, Diane, Kym, Jim, Diane, Ferris, Laura, Li, Herschel, Ferris, Gerri
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.
3. A diagnosis, better understanding, and proper care will provide for better quality of life for those with a Marfan diagnosis.
Announcements
Dr Rose – Recovering from surgery
Scott Allen – Recovering from surgery
Jesse – April 4 Baby born via C Section
For those people that may be interested in home PT/INR service
REALTIME DIAGNOSTICS * 866-662-7897 * www.realtimeinr.com
Marfanlife link: Marfan-List@marfanlife.net
 |
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.
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.
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:
- 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
|
