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Has anyone heard of VEXAS syndrome?

Blood Cancers & Disorders | Last Active: Aug 29 3:42pm | Replies (44)
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@anne8185

My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October his bone marrow biopsy showed he has VEXAS. A genetic mutation identified in 2020 by NIH. It is an autoimmune disorder that causes multiple symptoms including MDS. He is with Emory Winship in Atlanta. Would like to connect with any others that have this newly named disease.

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Replies to "My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October..."
Colleen Young, Connect Director | @colleenyoung | Jan 13 8:55am

Hi Anne, I moved your posts about connecting with others living with VEXAS to this existing discussion in the Autoimmune Diseases support group. Click the link to read previous helpful posts and to connect with members like @mayo2290 @rjmatavish @caithanrah and @bhadfield who also have this newer discovered autoimmune disorder.

- Has anyone heard of VEXAS syndrome? https://connect.mayoclinic.org/discussion/has-anyone-heard-of-vexas/

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momz | @momz | Jan 14 10:43pm

Hi Anne,
My name is Brenda. I was diagnosed August 2023 with MDS.
Hope you can find comfort in this group.
I always feel better knowing I am not alone in this journey.
In 2022 my father had throat cancer and I moved in with him and was his sole caregiver for 5months, so I understand both sides. Please remember to take time for yourself!
😊Brenda

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