A previous blog on this website addressed questions about child development and aHUS that arose from the Rare Disease Day video.
Parental concern about the effect of any a serious and debilitating illness may have on their child’s development is a natural.
For children with aHUS no less so ,particularly where chronic kidney disease remains a significant co morbidity and dialysis treatment has to be coped with too. Often with dialysis one of the basic bodily functions stops altogether after the kidneys cease to function. However some function may continue.
A fundamental stage in childhood is when the child is ready for potty training. This applies to all children and there is a spectrum of ages when the child is ready and the parent is prepared to tackle it.
Jaxson of Agra, Oklamhoma USA asks “Does aHUS make it harder to potty train?”
Whilst there may be generic studies of this issue, and ,therefore, there are likely to be experts who would give advice. On the other hand there is little, if any, specific expert information about the subject for aHUS children.
Probably the most likely source for a debate on the subject is in the aHUS social media. This blog topic arose in the then “Foundation for children with atypical HUS” website nearly eight years ago . The discussion can be read at this link here
What is apparent from the Rare Diseases Day video is that an aHUS agenda for research needs to address life stages from the very young to the old. Hopefully for the latter group there will be many more still living with aHUS than there have been in the past