Loeys-Diez Syndrome

Posted by tammy357 @tammy357, Fri, Apr 5 10:54pm

My friends 25 yr old son from Chicago has LDS . He's currently in a Phoenix hospital with a collapsed lung. There are no LDS Syndrome Specialists at the hospital he's admitted. They may need to perform surgery. I don't know all the details I'm reaching out to you for any information.
Can anyone provide me with a specialist at Mayo or in the Phoenix area? If so please contact me.
Tammy

Hi @tammy357, that must be so scary for your friend having no treatment options for their son.

I wanted to share the contact information for Mayo Clinic Arizona 855-408-7762 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday for more information on appointment go to the following link: https://www.mayoclinic.org/appointments

Also, based on my research, I see that Loeys-Diez Syndrome is similar to Marfan Syndrome, so i wanted to share this discussion on Marfan as it may be of some help: https://connect.mayoclinic.org/discussion/anyone-with-marfans-syndrome-on-this-thread-please-i-am-looking-for/?pg=1#comment-91732

Do you happen to know how long ago your friend's son was diagnosed with Loeys-Diez Syndrome?

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Hi @tammy357,

I wanted to follow up and ask about your friend’s son – how is he doing? Are you able to share whether he had surgery?

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