Anyone familiar with DDX41?

Hi @asarnesejr There is another member in the forum, @sherbs, who was diagnosed with MDS with the DDX41 mutation.
Here is their original comment followed by my reply:
https://connect.mayoclinic.org/comment/1187880/
https://connect.mayoclinic.org/comment/1188051/
What does your hematologist suggest for treatment options?

I believe I might be the only (somewhat) active participant on these forums with a DDX41 mutation. Regardless, we are all unique and each of our cases can be very different regardless of what mutations we have...

Mayo is, in my opinion, a 'must see' for any DDX41 patient.

This is not to induce anxiety but do not hesitate to seek an opinion from Mayo. I say this because they are the best, most experienced, team of physicians when it comes to handling DDX41 patients. Send them everything you have or even consider doing another biopsy with them. I don't know where you live or how challenging it might be to get to Mayo but there is no better group with understanding of DDX41 mutations.

Once you have had an in-person visit with Mayo, subsequent visits can be virtual or telephone.

I'm happy to answer any questions you may have, but none of my experience may apply in your case. Mayo can get you started on the right path - they've done the research and they can back up their recommendations with data.

My experience at Northwestern Medical was completely the opposite and I couldn't be more thankful that I made the trip to Mayo Rochester!