Living with Marfan Syndrome or a Related Condition
119 videos • 11,163 views • by The Marfan Foundation
1
How and when should I talk to my child about Marfan syndrome?
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2
How can I advocate for my child at school?
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3
How is Marfan syndrome diagnosed?
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4
How much weight can I lift if I have Marfan syndrome?
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5
How successful is aortic surgery in Marfan syndrome?
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6
Is there a blood test for Marfan syndrome?
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7
What activities increase the risk of retinal detachment?
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8
What are the "related disorders," and how do they compare to Marfan syndrome?
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9
What are the special considerations for pregnancy in Marfan syndrome?
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10
What are the symptoms of an aortic dissection?
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11
What are vascular problems associated with Marfan syndrome?
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12
What is a "6 minute walk test" and why is it helpful for people with Marfan syndrome?
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13
What is Ehlers Danlos syndrome?
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14
What is familial aortic aneurysm?
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15
What is Loeys-Dietz syndrome?
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16
What is Marfan syndrome?
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17
What is the outlook for patients with Marfan syndrome or related disorders?
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18
What is the outlook for vision of patients with Marfan syndrome?
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19
What is the status of research on familial aortic aneurysm?
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20
What is the Thoracic Aortic Dissection (TAD) Coalition?
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21
What would you say to a family that has recently received a Marfan diagnosis?
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22
Why does Marfan syndrome affect the lungs?
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23
Why is it important to have regular echocardiograms?
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24
How do you monitor a valve which has been replaced?
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25
How has the outlook changed for patients with Marfan syndrome over the years?
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26
How important is it to connect with others with Marfan syndrome?
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27
What are the psychological effects after surgery?
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28
What can patients do to aid in their own recovery?
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29
How can a child participate in their treatment?
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30
How do kids with Marfan syndrome help one another?
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31
How does the diagnosis effect a family dynamic?
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32
Should Marfan patients worry about having children?
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33
What challenges might my child face in school, and how can I help?
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34
What is the most important thing to do after receiving the diagnosis?
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35
What is the role of the genetic counselor?
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36
What makes you hopeful?
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37
Are there special considerations for pregnancy?
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38
Should I tell people that I have Marfan syndrome?
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39
What is it like to age with Marfan syndrome?
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40
What is Marfan Syndrome?
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41
What is the current direction of Marfan syndrome research?
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42
What is the first thing I need to know once I am diagnosed with Marfan syndrome?
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43
What is the life expectancy of someone with Marfan syndrome?
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44
What is the success rate for aortic root replacement surgery?
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45
What should I expect in the long term with Marfan syndrome?
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46
Does Marfan syndrome define you?
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47
How can parents advocate for their child in school?
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48
How can parents advocate for their children?
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49
How can The Marfan Foundation conference help families with Marfan Syndrome?
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50
Why are you hopeful?
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51
What is the emotional impact of the diagnosis on the family?
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52
What does a parent need to know about health insurance?
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53
How do people with Marfan syndrome cope with depression?
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54
How can you find the right doctors?
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55
How has a patient's experience changed over the course of your career?
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56
Do people with Marfan syndrome face discrimination in healthcare?
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57
What are the special considerations for seeking health or life insurance?
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58
What resources exist for a person diagnosed with Marfan syndrome?
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59
What is the life expectancy of a person with Marfan syndrome?
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60
What is Marfan syndrome?
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61
What should I look for in a dentist orthodontist?
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62
What is the future of orthodontic research on Marfan syndrome?
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63
What role might dentists or orthodontists play in diagnosing Marfan syndrome?
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64
Are people with Marfan syndrome more likely to develop cavities?
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65
What is endocarditis and how can it be prevented?
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66
When should treatment using a palate expander be initiated?
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67
How is crowding of the teeth treated?
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68
Is orthodontic treatment painful?
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69
How is a posterior crossbite treated?
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70
What is posterior crossbite?
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71
What causes jaw pain in Marfan syndrome? What is TMJ?
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72
What is the most common orthodontic problem affecting people with Marfan syndrome?
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73
When should a child with Marfan syndrome see an orthodontist?
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74
What dental orthodontic features are common in Marfan syndrome?
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75
What is a genotype/phenotype correlations?
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76
Intro to Backpack Health PRO for the Marfan and Related Disorders Community
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77
Joining The Marfan Foundation Group in Backpack Health PRO
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78
Personal Perspectives: Maximize Your Doctor Visits
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79
Personal Perspectives Panel: Physical Activity & Exercise
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80
Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine
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81
Living with Risk
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82
Personal Perspective Panel: Coping with the Marfan Diagnosis
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83
Personal Perspectives: Luke and Kelly - Coping with Marfan Diagnosis
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84
Personal Perspectives: Steve - Coping with the Marfan Diagnosis
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85
Transitioning from Pediatric to Adult Care
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86
Exercise and Marfan, LDS, and VEDS: The Latest Research
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87
Exercise: Is it safe and healthy?
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88
Emergency Planning
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89
Genetic Testing Update
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90
Setting Up a Care Team
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91
Pain Management
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92
Rosemarie Talks Avoiding Overwhelm & Emergency Preparedness
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93
Rosemarie's Key Tips for VEDS Emergency Preparedness
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94
Creative Ways to Stay in Touch with Local 1st Responders About VEDS
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95
Get To Know Local 1st Responders, Save VEDS Lives
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96
Share Your VEDS Story with 1st Responders, Save Lives
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97
Registrar ahora (register now): https://bit.ly/spanishlanguagesummit24. Asista con el Dr. Bowen!
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98
Betsy's real! #marfanrealreels
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99
Nosha shares her family's journey with Marfan syndrome.
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100
Christina's real is all about maximizing our abilities and living in gratitude.
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101
Sydney turns life with Marfan into life with music.
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102
Crystal gets real about her family's life alongside Marfan syndrome.
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103
Arinya gets real about her journey with Marfan syndrome. #marfanrealreels
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104
Christi Gets Real: Marfan Can Look Different for Different People
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105
Anna gets real about Marfan lived experience & mental health. "You are not alone!" #marfanrealreels
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106
Mathias gets real from Argentina. #marfanrealreels
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107
Adréanah raises the important topic of managing secondary complications, that's her real.
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108
Basilia wants all youths with Marfan to know they are not alone! #marfanrealreels
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109
Beckett went for it. Who can relate to the short pants situation? #marfanrealreels
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110
Betsy focuses on the positive parts of living with Marfan syndrome. #marfanrealreels
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111
Camp Victory 2023 in Georgia #themarfanfoundation
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112
Camp Victory California, 2023 #themarfanfoundation
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113
Women's Health: Beyond Family Planning
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114
Marfan.org is available in 25 languages
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115
Aging with a Connective Tissue Condition
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116
Tammy Gets Real About Life with Loeys-Dietz Syndrome #loeysdietzrealreels
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117
Join Carolin at the London Patient Symposium
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118
Tromsø Aorta 2024 Recap with Dr. Kim Eagle
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119
VEDS Emergencies: Know When to Go & What to Say
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