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Northeast Indiana Network Group
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Back to Chapter and Network Home Page Meet our Network Group Leaders  Ellen England - Auburn; (260) 925-4041; eeengland@gmail.com. Ellen is affected by Marfan Syndrome and has been active with the NMF for many years. She is a past member of the Board of Directors, and was also involved with the Northern California Chapter before moving to Indiana.
Beth Dawson - Monroeville; (260) 623-3553; larrybethdawson@verizon.net
 Melody Franklin - Fort Wayne; (260) 490-0164; Frankiex5@verizon.net. Melody and Jim Franklin's youngest daughter was born in 2007. She was diagnosed with Marfan Syndrome at 10 months of age.
Contact Information
Contact:
Ellen England Phone:
(260) 925-4041 E-mail:
eeengland@gmail.com
Description of the Group The Northeast Indiana Local Network Group was formed in Spring 2008 and brings together the Marfan community in Northeast Indiana, Northwest Ohio, and Southern Michigan. We plan to meet three times a year and will first concentrate on medical presentations by area professionals. We are fortunate to be able to hold our meetings at the Parkview Women's Health Center in Fort Wayne, where we have access to a large meeting room and a comfortable library area. The group is still forming, so please get involved and help it grow into a resource that works for you. Meeting Location Parkview Women's Health Center
(Parkview North, Entrance 2)
11123 Parkview Plaza Drive, Suite 200
Fort Wayne, IN 46845
Upcoming Meetings and Events
Our next meeting is scheduled for Saturday, May 15, 2010 from 1 to 3 pm. This will be an informal lunch get-together so we can get to know one another better. Pizza and drinks will be provided. We will also meet on Saturday, October 16, 2010 from 1 to 3 pm. Our speaker at this meeting will be Dr. David T. Sowden, M.D. from Fort Wayne Cardiovascular Surgeons. We met on March 6, 2010 and watched "In My Hands: A Story of Marfan Syndrome." There were seven adults and five children in attendance. We also shared a potluck lunch. Network News October 24, 2009 Meeting Report
Northeast Indiana NMF Local Network Group
October 24, 2009 Meeting Report
The Northeast Indiana NMF Local Network Group met on October 24th, from 1-3 p.m. at the Parkview Women’s Health Center in Fort Wayne. Ten adults and five children attended the meeting. Our speakers were Dr. Ali P. Shahriari, M.D., assistant professor of cardiac surgery at I.U. School of Medicine, and Susan Romie, M.S., C.G.C., coordinator of the I.U. Marfan Syndrome Program.
Announcements:
• There is a new online survey for patients and parents of patients. Contact Ellen, or the NMF for more information.
• The NMF website contains a new section on Healthcare Coverage and SSI/SSDI.
• The NMF has made available a position paper on the Healthcare Reform debate.
Notes from Susan Romie’s talk:
The I.U. Department of Medical Genetics was established in 1966. It has over 200 employees. The Clinical Genetics Department was established by Dr. Weaver in 1976.
Genetics Clinic Appointments:
• Evaluation
• Testing
• Ongoing evaluation
• Genetic Counseling – Help you learn about causes, and explain how it’s passed down.
• 1st visit should take 1 to 2 hours. They will do a physical exam and take a medical history. They do special tests, and provide prognosis and management.
• See doctor annually
The Kathryn L. Ober Lectureship on Marfan Syndrome was established in 2005 by the support of John and Betty Ober, in memory of their daughter, Kathryn L. Ober. Each year a medical expert on Marfan Syndrome is invited to speak to patients, families, students, and medical personnel. Past lectureships have featured Drs. Hal Dietz, Reed Pyeritz, Duke Cameron, Elias Traboulsi, and this year was Dr. Paul Sponseller.
75% of Marfan cases have a positive family history, and 25% are spontaneous mutations. Symptoms tend to be similar in families. The Fibrillin-1 gene was discovered in 1991 by Dr. Dietz. It’s located on chromosome 15, a large gene, 65 exons. More than 200 mutations have been identified. Fibrillin protein helps control growth factor TGF-B. Causes reduced amounts of fibrillin—weakened connective tissue.
Gene testing for Marfan is blood test with accuracy of 70 – 93%. There is a better chance of finding the mutation with patients who have family history.
Why do gene testing?
• To confirm diagnosis
• Predictive testing for at risk relative who doesn’t meet the clinical criteria.
Cost is around $1500 - $3000 for the initial analysis, and $500 for other family members once the mutation has been identified.
Outcomes of FBN1 Mutations:
• Marfan
• Neonatal Presentation of Marfan
• Familial Ectopia Lentis
• Shpintzen-Goldberg Syndrome
• MASS
• Etc.
FBN1 mutation doesn’t always equal Marfan. Marfan symptoms increase with age.
Ghent Criteria, 1996, is the current method of clinical diagnosis. “Ghent 2” is being developed: Ectopia lentis and aortic root aneurysm are cardinal features. It uses scoring system to weight systems. Updates on the new criteria, as well as research and clinical trial updates appear on the NMF website.
Notes from Dr. Shahriari’s talk:
Dr. Shahriari is assistant professor of cardiovascular surgery at IU. He has an interest in aortic and valve diseases.
90% of Marfan patients have cardio abnormality. They may involve the heart valves and aorta and other large blood vessels.
Mitral valve prolapse – Elongation of supporting structure to leaflet. Repairable about 80% of the time.
Aortic root dilates and becomes pear shaped.. Causes leaky aortic valve—longer it leaks, the more damage to leaflets.
Root aneurysm – Modified Bentall procedure, or valve sparing root replacement—this preserves patient’s leaflets.
Thoracic Endografts – Dr. Shahriari is a big proponent, but results have not been studied in Marfan patients. Still uses in emergencies.
Suggests:
• Yearly follow up
• Restrictions on physical and stressful activities, especially weight lifting.
• 24/7 access to specialized care.
Dates were set for next year’s meetings: March 6, May 15, and October 16, 2010.
--Ellen England 10/27/09
May 16th, 2008 Meeting Report
 
The Northeast Indiana NMF Local Network Group met on May 16th, 1-3 p.m. at Parkview Women's Health Center. Our Speaker was Dr. Mohammed Ghazali, pediatric cardiologist. This is brief note from Dr. Ghazali's visit to the health Center: MFS is an autosomal dominant disorder of connective tissue involving chromosome 15. The incidence is 1 in 3000 to 5000 people. It affects ocular, cardiovascular, muscular systems—any connective tissue. It sometimes appears in neonatal and prenatal forms, with a poor prognosis. Dr. Ghazali touched on diagnostic criteria, but didn’t go into much detail, feeling that we are already familiar with it. He mentioned the major criteria of dissection of the ascending aorta and the minor criteria of leaking mitral valve, mitral regurgitation, mitral annular calcification, and flattening of the cornea. He focused on the following topics: Medical Management, Surgical Management, AHA/ACC Guidelines 2006, Radiology, Pregnancy (as concerns young female patients ) including Management and Complications, and Prognosis. Dr. Ghazali took questions during and at the end of the presentation March 14th, 2008 Meeting Report
 The Northeast Indiana NMF Local Network Group met on March 14, from 1-3 p.m. at the Parkview Women’s Health Center in Fort Wayne. Twenty people attended the meeting. Our speaker was Dr. Peter Jakacki, M.D., a local family physician, and his talk was on An Integrative Approach to Marfan Syndrome.
Dr. Jakacki was a chiropractor before attending medical school and has an interest in Integrative Medicine, especially in the importance of nutrition and supplements to stay as healthy as possible. He discussed several steps to achieve optimal health:
• Diet and nutrition
• Exercise
• Posture
• Manipulation and massage
• Psychosocial and spiritual
• Rest and sleep
He spoke in detail about steps we can take to improve our diets, focusing on good sources of protein and fats, vitamins (especially Vitamin D), and problems with toxicity in foods from pollution. He stressed ways to reduce pain-causing inflammation in our bodies. He also touched on the importance of appropriate exercise (walking is good, avoid isometric exercise), posture (he suggests using a firm mattress or a heated waterbed), and use of orthotics for Marfan foot problems. The group had lots of questions for him, and he passed out several helpful handouts.
We had roundtable introductions and announcements, and then adjourned for refreshments. November 1st, 2008 Meeting Report 
The Northeast Indiana NMF Local Network Group met on November 1st, from 1-3 p.m. at the Parkview Women’s Health Center in Fort Wayne. Ten adults and four children attended the meeting. Our speaker was Patricia Bader, M.D. from Northeast Indiana Genetic Counseling Center in Fort Wayne. Dr. Bader gave a broad overview of Marfan Syndrome, describing its genetic basis, symptoms, effects on body systems, clinical and genetic diagnoses, treatment options for the various resulting problems, and physical activity guidelines. She also touched on related connective tissue disorders and issues concerning the testing of competitive athletes. Dr. Bader answered many questions for us at the end of her talk. We discussed the direction the group wants to go in for the next year. We decided to continue with the speaker format, and will again meet three times, although we will schedule the meetings in early and late Spring and one in Fall, so as to avoid the summer months when it is hard for people to make commitments. We also discussed topics for future meetings and people were interested in orthopedics, pain management, and alternative and complementary medicines. We agreed to make future meetings "potluck" format, whereby people are encouraged to bring finger-foods to share, rather than one person taking responsibility for refreshments. August 9th, 2008 Meeting Report 
 
The Northeast Indiana NMF Local Network Group met on August 9th, from 1-3 p.m. at the Parkview Women’s Health Center in Fort Wayne. Ten adults and three children attended the meeting. Our speaker was Barbara Schroeder, M.D. from Northeast Ophthalmology in Fort Wayne. Dr. Schroeder talked about ocular concerns inherent in Marfan Syndrome, including lens dislocations, early cataracts, retinal detachment, and glaucoma. She described how dislocations are caused by weak zonules, and discussed some of the ways of dealing with them, including surgical removal of the lens and correction with interocular lenses, contacts, or glasses. She also talked about some of the issues with treating Marfan patients for cataracts, stressing the care with which the procedure must be undertaken by the surgeon to avoid problems. She said glaucoma is a problem that often goes undetected in the early stages and then can cause blindness. And she cautioned that all Marfan patients should know the symptoms of retinal detachment: new floaters and flashes of light. Because the group was so small, Dr. Schroeder was able to answer each of our individual questions, which we found very helpful. The group started a resource sharing list of doctors in the area who are knowledgeable about Marfan syndrome. Hopefully with time this list will grow into a useful tool for sharing positive experiences about local resources. Two announcements were read from the NMF: the adult losartan vs. atenolol trial at Brigham and Women’s Hospital and Children’s Hospital in Boston, and the availability of the new emergency template on the NMF’s website. A copy of the template was available for inspection. Our next meeting was announced. It will be Saturday, November 1st, from 1 – 3 p.m. at the Parkview Women’s Health Center. The featured speaker will be Dr. Patricia Bader. During the meeting the children were entertained in the next room, and afterwards they joined us and we enjoyed fresh garden vegetables with dip, and chips and homemade salsa.
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