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Has anyone heard of VEXAS syndrome?
Blood Cancers & Disorders | Last Active: Aug 29 3:42pm | Replies (44)Comment receiving replies
My husband was diagnosed with MDS 5 yrs ago. After his last bone marrow biopsy in November it was discovered by genetic testing that he has VEXUS. It is a syndrome that was identified in 2022. He has rashes and superficial vein clots along with his low blood counts due to the MDS. They have always called him an enigma but this diagnosis explains his unusual symptoms. Anyone else know of this newly diagnosed syndrome?
Replies to "My husband was diagnosed with MDS 5 yrs ago. After his last bone marrow biopsy in..."
Hello @anne8185, welcome to Connect. I am not familiar with VEXAS so as you can see @colleenyoung has moved your posts to this current group with other members who have been diagnosed with this condition. At this time there doesn’t appear to be members who have both MDS and VEXAS.
So I would like to introduce you to members in our MDS support group. Here are a couple of links which take you over to that group if you’re interested.
Myelodysplastic Syndrome (MDS) (with @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader @ikampel2 and many others who have MDS)
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
Living with MDS (with @momz @nbadry @rrivory @honeymae and others with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
Here is a helpful article about MDS for you: https://www.healthline.com/health/cancer/mds-hematology#symptomshttps://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548%23:~:text=Myelodysplastic%2520syndromes%2520%2528MDS%2529%2520are%2520a%2520group%2520of%2520bone,how%2520the%2520bone%2520marrow%2520creates%2520healthy%2520blood%2520cells.
What type of treatment is your husband receiving for his MDS? Or is he in an active surveillance period?
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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.