Taylor you are absolutely right, I agree with everything you are saying! While I do like the term aHUS, I am also part of the group that agreed to update the terminology. TMA is a useful umbrella term but the question remains, which of the TMA’s are aHUS and require complement blockade? For example, I’m interested in pregnancy TMA which includes HELLP syndrome, TTP, and aHUS. Both HELLP and aHUS may be considered complement mediated TMA, but how do we prove complement is the problem? Truthfully, we are still left in a conundrum, but I hope that ultimately the TMA terminology will bring our communities together, and bring more attention to aHUS and other rare TMA disorders. Thank you for all that you do for the aHUS/TMA community!
First thank you for all you do for patients! I don’t think it would be easy to try to come up w a name consensus. ha and more cooks in the kitchen may not be helpful. It’s a complicated disease or frankly series of diseases. It’s a huge task. But also, now where do we go from here?
Taylor you are absolutely right, I agree with everything you are saying! While I do like the term aHUS, I am also part of the group that agreed to update the terminology. TMA is a useful umbrella term but the question remains, which of the TMA’s are aHUS and require complement blockade? For example, I’m interested in pregnancy TMA which includes HELLP syndrome, TTP, and aHUS. Both HELLP and aHUS may be considered complement mediated TMA, but how do we prove complement is the problem? Truthfully, we are still left in a conundrum, but I hope that ultimately the TMA terminology will bring our communities together, and bring more attention to aHUS and other rare TMA disorders. Thank you for all that you do for the aHUS/TMA community!
Oh and yes I’m Team TMA 🫶
First thank you for all you do for patients! I don’t think it would be easy to try to come up w a name consensus. ha and more cooks in the kitchen may not be helpful. It’s a complicated disease or frankly series of diseases. It’s a huge task. But also, now where do we go from here?