Connective Issues Spring 2019


good intentions, can be difficult to hear. In those moments, you want to be aware of your emotional status. “Everyone is entitled to emotional moments,” Katie said. “It’s important to recognize them and understand that a really down moment is probably not a good time to go into too much detail. At the same time, it is equally important to be honest with your feelings, and help others understand how their responses and questions may be affecting you.” The Marfan Foundation addresses quality of life topics, like this, that affect people with Marfan, Loeys Dietz, vEDS, and other genetic conditions throughout the year, in our blog and webinar series. This year's Annual Conference will also offer a full com- plement of quality of life workshops. Katie will be leading a session on disclosing your diagnosis to others, while other topics this year will include loss and anger, living with depression and anxiety, and various coping techniques, such as journaling. There will also be support groups for spouses, unaffected siblings, and other segments of our community, and a wide range of medical work- shops.

In the past 35 years, medical advances and scientific breakthroughs have changed the outlook for people with Marfan and related conditions. People can now juggle their medical care with their regular (though sometimes modified) everyday life. Those around them might not even know they are dealing with a complex life-long medical condition. We hear this question frequently: When and how should I disclose my diagnosis? Katie Wright, of Florida, who was diagnosed with vascular Ehlers-Danlos syndrome in 2017, said that, in many instances, it is important to disclose the diagnosis. However, the flavor of the discussion may be different for

friends, family, potential romantic partners, and employers. Regardless of the type of relation- ship, Katie recommends a factual approach when first opening up about a diagnosis. “You have to know how to talk about it in a straightforward way that makes it easy to understand. At the same time, you have to be ready for a range of responses,” she said. Some responses, even those with

u Katie Wright will lead a workshop on disclosing your diagnosis at the Annual Conference. @TranslucentOne

You can view the full Annual Conference program and register on our website at .

Photo courtesy of Katie Wright

Recordings from our Marfan and Related Conditions Empowerment Series, featuring webinars on quality of life topics, and Virtual Medical Symposium Series, featuring medical topics presented by members of our Professional Advisory Board and other experts, are available anytime online. Access webinars like Social Security Disability, How to Talk with Your School Nurse, Managing Pain, and other quality of life questions at . Medical webinars on topics such as Taking Care of Your Aorta and Keeping Your Spine, Limbs, and Feet Healthy in Marfan Syndrome and Related Conditions, can also be accessed through our website at . Watch for a new line-up of webinar topics beginning in the Fall of 2019. Have a topic you’d like to see covered? Please send an email to

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