Hi Ashley I did the research that Taylor used in her story. Von Gassers work has been covered on the aHUS alliance website for several years. The history is now being covered in a series of article called “Before aHUS Endeavours Fade” . Similarly there are many articles on the different HUSs plus articles on new names for them. This article is one that shows the cause of the confusion. atypical HUS name became more commonplace 25 years ago. Prior to that it was HUS/TTP predominantly and was discovered over 100 years ago as a “clumping disorder”.
Thank you for digging in & researching our disease further, Taylor! I found this article very interesting; especially since I've never heard anyone mention Baby Barbara or her story. I was always under the impression that aHUS wasn't discovered until about 20 or 25 years ago. Great job unveiling this history!
Another thing i found very interesting was the statement you made about Conrad identifying aHUS as multiple syndromes rather than just one disease. I've never thought of this disease in that manner but now that you mention it, that's exactly what it is...multiple syndromes. And you're spot on about that causing confusion in ppl. Some say it's an autoimmune disorder. Some say it's a kidney disease. Some say it's a blood disorder. The fact of the matter is, it's all of those! Just curious, did any of your sources happen to list names for the syndromes that aHUS is composed of? I'm wondering if they even have individual names. But if they do, it might be worth us reading up further on them in order to learn a little bit more about aHUS.
Glad you found it interesting! Really the bulk of all this is on the aHUS Alliance site! Len Woodward did a great job sharing the history in a few posts! Mine is like a cliff notes version but I really wanted to remember Barbara as more than a footnote. Her little life was the first domino to so much healing and medical discovery.
Thank you for the history lesson on the disease. So sad about the babies who died. Happy there are treatments now and better outcomes. Grateful you are here to grace the world with your beauty, presence, and special gifts to the world.
Hi Ashley I did the research that Taylor used in her story. Von Gassers work has been covered on the aHUS alliance website for several years. The history is now being covered in a series of article called “Before aHUS Endeavours Fade” . Similarly there are many articles on the different HUSs plus articles on new names for them. This article is one that shows the cause of the confusion. atypical HUS name became more commonplace 25 years ago. Prior to that it was HUS/TTP predominantly and was discovered over 100 years ago as a “clumping disorder”.
https://www.ahusallianceaction.org/ahus-is-confusing/
Great research Len! Always appreciate how you work so hard to share aHUS knowledge with the community!
Thank you for digging in & researching our disease further, Taylor! I found this article very interesting; especially since I've never heard anyone mention Baby Barbara or her story. I was always under the impression that aHUS wasn't discovered until about 20 or 25 years ago. Great job unveiling this history!
Another thing i found very interesting was the statement you made about Conrad identifying aHUS as multiple syndromes rather than just one disease. I've never thought of this disease in that manner but now that you mention it, that's exactly what it is...multiple syndromes. And you're spot on about that causing confusion in ppl. Some say it's an autoimmune disorder. Some say it's a kidney disease. Some say it's a blood disorder. The fact of the matter is, it's all of those! Just curious, did any of your sources happen to list names for the syndromes that aHUS is composed of? I'm wondering if they even have individual names. But if they do, it might be worth us reading up further on them in order to learn a little bit more about aHUS.
Glad you found it interesting! Really the bulk of all this is on the aHUS Alliance site! Len Woodward did a great job sharing the history in a few posts! Mine is like a cliff notes version but I really wanted to remember Barbara as more than a footnote. Her little life was the first domino to so much healing and medical discovery.
yes, she is your Angel!
Thank you for the history lesson on the disease. So sad about the babies who died. Happy there are treatments now and better outcomes. Grateful you are here to grace the world with your beauty, presence, and special gifts to the world.
So grateful too. While her life was short, I wanted to remember the patient who led to so many lives eventually saved. 🙏