Connect Issues Fall 2021

AS HEARD ON SOCIAL MEDIA

What is one thing you wish people knew about Loeys-Dietz syndrome ? • We are not hypochondriacs, we are not lazy. • That just because you look ok, it doesn’t mean that every part of your body doesn’t cause huge pain and mobility issues. • That it affects so much of your health! Got diagnosed last year and it explains like three other seemingly unrelated problems I’ve had! • There's a physical side with aches, pains, weird bowel problems, constant fatigue, scanning, heart condition…There’s also a mental side, a loss of self and/or purpose, a constant climb up a mountain, a battle that makes your head question your own thoughts, anxiety and depression. • That I wish I had an easy answer/explanation. Every time I'm asked about a health issue I feel like it takes several minutes to answer in a real way. There are always follow-up questions and I may even have to draw a picture. What is one thing you wish people knew about VEDS ? • I wish people knew that by limiting some of our children's activities, we aren't being unfair parents. We are just trying to follow the safety measures. • I wish people took the severity more seriously. • I wish people understood that not enough is known about this disease/diagnosis and would spread the word. • That VEDS is not just flexibility, but some- thing than can kill me or my children. It’s not something to be brushed off. It's serious, and I want to be taken seriously. • That even if you can’t be cured, it’s worth being diagnosed. • That it is very different than other forms of Ehlers-Danlos. • That it is dangerous and that our extended families need support because they worry. • It is the cause of many mysterious ailments of folks that have it!

What is one thing you wish people knew about Marfan syndrome ? • That it is hereditary and please, for goodness sake, get yourself checked if it runs in your family. • Chronic pain and why I have so many doctor and ER visits. • That there is a medical reason for why I'm this tall! • There’s more to living with Marfan syndrome than seeing a cardiologist and an ophthalmologist. Those are the two most catastrophic areas of concern, but quality of life is also impacted by connective tissue disorders. • There's no "look" to Marfan. We don't all look the same. • You can still live and enjoy life! You just have to be mindful of your own limitations and not overdo it. Take each day as it comes and make the most of it. Don’t let it define who you are inside. • It will not spread to other people. • That there is hope! It is not a death sentence. • How debilitating it really is, especially when you look "normal.” • That they are high risk for aneurysm. • That the hour medical lecture does not compare with a lifetime of personal experience!

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