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Lauren Lewis
BY Lauren Lewis

12 Resources for Marfan Syndrome Awareness Month

February is Marfan Awareness Month. As Marfan Syndrome is quite rare many people have not heard of this condition. Take some time this month to learn about Marfan, and find ways to help the cause. Here are 12 resources you should know about for Marfan Syndrome Awareness Month.

What is Marfan Syndrome?

Marfan syndrome is a genetic condition in which your body’s connective tissue is abnormal. About 1 out of every 5,000 people in the United States has Marfan syndrome. Marfan syndrome has a range of expressions, from mild to severe. The most serious complications are defects of the heart valves and aorta. It may also affect the lungs, the eyes, the dural sac surrounding the spinal cord, the skeleton and the hard palate.

What are the Signs and Symptoms?

Marfan syndrome often affects the long bones of the body. This can lead to signs, or traits, such as:

  • A tall, thin build.
  • Long arms, legs, fingers, and toes and flexible joints.
  • A spine that curves to one side. This condition is called scoliosis.
  • A chest that sinks in or sticks out. These conditions are called pectus excavatum and pectus carinatum, respectively.
  • Teeth that are too crowded.
  • Flat feet.
  • Stretch marks on the skin also are a common trait in people who have Marfan syndrome. Stretch marks usually appear on the lower back, buttocks, shoulders, breasts, thighs, and abdomen.
  • Skeletal Symptoms:
  • Nearsightedness and astigmatism
  • Fatigue, shortness of breath, heart palpitations, racing heart beats, or angina pectoris with pain radiating to the back, shoulder, or arm

What Treatment Options are There?

Marfan syndrome has no cure. However, treatments can help delay or prevent complications, especially when started early. Marfan syndrome can affect many parts of your body, including your heart, bones and joints, eyes, nervous system, and lungs.  At present, the syndrome is treated by simply addressing each issue as it arises and, in particular, preventative medication even for young children to slow progression of aortic dilation if such exists.

Resources for Marfan Syndrome

General Information

NIH1. National Heart, Lung, and Blood Institute 

The National Heart, Lung and Blood Institute provides a basic overview of Marfan Syndrome, including information on: causes,  who is at risk, signs and symptoms, diagnosis, treatment options, living with Marfan, clinical trials, and outside resources.

2. National Human Genome Research Institute

Topics at the National Human Genome Research Institute include:

NHGI

  • What is Marfan syndrome?
  • What are the symptoms of Marfan syndrome?
  • How is Marfan syndrome diagnosed?
  • What is the treatment for Marfan syndrome?
  • Is Marfan syndrome inherited?
  • Clinical Research on Marfan Syndrome
  • Additional Resources for Marfan Syndrome

Mayo Clinic3. Mayo Clinic

Mayo Clinic provides a detailed definition of Marfan Syndrome, including symptoms, causes, risk factors, complications, preparing for your appointment, tests and diagnosis, treatments and drugs, lifestyle and home remedies, and coping and support.

wikipedia4. Wikipedia

Wikipedia can be used when finding some general information about Marfan Syndrome. It breaks it down into a few basic categories: Signs and Symptoms, Pathogenesis, Diagnosis, Management, Prognosis, Epidemiology, History, Society and Culture, and References,

Marfan Syndrome Organizations and Resources

5. The Marfan Foundation

marfanBefore its founding in 1981, Marfan syndrome was largely unknown or misunderstood. Tireless efforts have led to many life-changing advances in the fight for victory over Marfan syndrome and related disorders.

The Marfan Syndrome Foundation works to advance the research for treatments that save lives and dramatically enhance quality of life for affected people. They provide a supportive community for everyone affected by Marfan syndrome and related disorders.

6. Canadian Marfan Association

Marfan   Introduction   HistoryThe Canadian Marfan Association (CMA) is a national charitable organization dedicated to saving lives and helping Marfan patients live a good quality of life. They are the only Association in Canada helping Marfan patients and the most reliable source for current and accurate information about Marfan syndrome.

7. Marfan Worldwide 

marfan worldThe International Federation of Marfan Syndrome Organizations (IFMSO) was formally founded in 1992 at the Second International Symposium on the Marfan Syndrome in San Francisco, California. The purposes of IFMSO are to:

  • Share current, accurate information about the Marfan syndrome worldwide and facilitate international communication among medical professionals and the general public.
  • Establish standards for diagnosis and treatment of the Marfan syndrome.
  • Support and foster research throughout the world and facilitate communication with research centers and researchers worldwide.

8. Marfan Trust UK

The Marfan TrustFounded in 1988, the Marfan Trust funds research into the cause and prevention of Marfan Syndrome, a dominantly inherited cardiac disorder which also affects eyes and skeleton. Their website has information on Marfan syndrome, research projectspublications and ways to donate.

9. Stanford University Center for Marfan Syndrome and Aortic Disorders

StanfordThe Stanford University Center for Marfan Syndrome and Aortic Disorders is the largest of its kind in California and among the nation’s leading centers for the diagnosis and treatment of Marfan syndrome.

At Stanford Hospital, the Marfan Syndrome center is multidisciplinary, ensuring that patients with Marfan syndrome and aortic disorders have access to comprehensive diagnostic and management services from specialists in cardiology, cardiovascular surgery, ophthalmology, orthopedics and genetics.

Blogs

10. Musings of a Marfan Mom

marfanmomMaya is a mother of two boys (one who has autism and one who has Marfan syndrome). She writes about her personal experiences having Marfan and having a child with Marfan. This blog is not intended to take the place of medical advice from your doctor.  Always consult a physician with questions about your health.

Tissue Tales11. Tissue Tales

Katie blogs about life with a chronic illness and chronic pain, from a 19 year old’s perspective. Tying into that she writes about Marfan Syndrome and connective tissue disorders and day to day life living with them.

12. Living with Marfan Syndrome

living with marfanAllison and her 3 brothers have marfan syndrome. Her  youngest daughter and nephew have been diagnosed as well. She blogs to raise awareness, and to hopefully help others who may be dealing with this. She not only shares her family’s experiences but also the stories of others.

Top Photo Credit: Facebook/Marfan Foundation

Lauren Lewis

Written on January 30, 2014 by:

Lauren Lewis began working at the Friendship Circle in May 2012 as the Communications and Event Coordinator. After participating in Dance Marathon at the University of Michigan and meeting some amazing kids with special needs, Lauren fell in love with the cause and never stopped advocating. When not at the Friendship Circle, she is wearing maize and blue and enjoying life in Detroit. You can connect with Lauren on LinkedIn.
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