The Marfan Blog

The First 6 Things You Should Do When Diagnosed with Marfan Syndrome

Jan 2, 2014 by The Marfan Foundation

It’s the beginning of the new year. Is it the beginning of your Marfan journey? If you just heard the words “Marfan syndrome” for the first time, you may feel like your world has been turned upside down. Now what? Here are six things you need to do after getting diagnosed so you can get on with your life.

Learn about your condition.

Topics: Diagnosis

What the Marfan Community Means to Us

Dec 17, 2013 by Alix McLean Jennings

When my younger daughter Cassie turned one almost six years ago, I thought we'd ended the craziest year of her life. But this past year is definitely in the running. And I’m sharing our story during this year’s Research and Progress Drive because, more than ever, I see how important the work that we all support through The Marfan Foundation is in my family's life.

Cassie was diagnosed with Marfan syndrome at birth, thanks in part to The Marfan Foundation’s early diagnosis initiative, and the following months involved weekly visits with each of her 11 specialists. The care Cassie received was incredible -- very thorough and attentive -- and she thrived. I contacted The Marfan Foundation when she was just six weeks old – and they have been a source of information and support ever since.

Over the next five years, Cassie's doctors' appointments were kept to her pediatrician and her three major specialists -- cardiologist, orthopedist, and ophthalmologist. Her heart was monitored by echos every four months and her aorta was kept in check with medication. She wore ankle braces and had a back brace for a time. And she has worn glasses since she was 5 months old. Things were busy, but manageable.

Topics: Family Planning, Marfan Community, Diagnosis

Four Questions to Ask Your Family Over the Holidays

Nov 13, 2013 by The Marfan Foundation

When is the most common time of the year for families to get together under one roof? That's right, during the holidays. They are upon us, and soon you will have a few generations of family members sitting at the dinner table together catching up, telling stories, and enjoying each other’s company.

Marfan syndrome and related disorders are in most cases genetic. Meaning they can be passed down from generation to generation. Why should this matter to you? The health history of your family is your greatest asset to help you and your doctors determine potential health risks for you or a family member. You may be able to prevent some conditions by making changes in your lifestyle and making healthier life choices. So why not open that discussion up to your grandparents, aunts and uncles, nephews, and siblings? Here are four questions you can ask relatives about your family health history.

Did we have relatives who passed away at a young age?

Topics: Diagnosis, Living Successfully