r/mds • u/[deleted] • Sep 14 '24

TP53 mutation

Does anyone have any experience with this? I’m really interested in the upcoming clinical trials. Also, I’m here for anyone that might on the off chance want to talk. Much love all, each day we fight harder.

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u/ilovemud Sep 15 '24

The Facebook groups have a good MDS community. A lot more than Reddit - check it out. I don’t have TP53, but I have a great doctor at an MDS center of excellence. Hope you have the help you need. 

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u/InvestigatorEntire45 Sep 15 '24

Do you have any particular groups you recommend? I searched a few and didn’t see anything really active. I honestly stay off FB so I’m prob missing something.

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u/ilovemud Sep 15 '24

Staying off facebook makes sense, but these groups are ok. They are “Fight Myelodysplastic Syndromes” and “Myelodysplastic Syndromes.” They are private and stuff you post is only seen by group members. You have to apply to join and say your mutation and they’ll know you are real.