I tell you about what it is like to live with the rare diagnosis Loeys-Dietz syndrome (LDS)

[@LanaKennedy121]

I’m so sorry you have to live with this.
So unfair. I really hope you find ways to have quality of life. My thoughts and prayers are with you. You don’t look like you have the “typical” loeys-dietz physical features. Stay strong. I hope you have days of peace ❤

[@MyRareLife]

No, I have no visible symptoms, that's right. I live a good life. This is only one aspect of my life. Thanks for your concern ❤

[@chelseewheaton4060]

But depending on which type it doesn’t always affect ALL areas of the body for all of those diagnosed. There is a wide spectrum

[@MyRareLife]

All areas of the body where there is connective tissue are affected by the diagnosis. How much and in what way, varies enormously of course! Everyone with Loeys-Dietz syndrome is an individual.