This may change with successful treatment now minimising neurological disability.
[dermnetnz.org]
Consequences of secondary amyloidosis, deafness, visual impairment, intellectual disability or existing developmental delay can or do persist, remaining stable or showing
[dermnetnz.org]
[…] hemiepiphysiodesis improved the contracture and the deformity, and IL-1 receptor antagonist dramatically controlled systemic inflammation, and the patient lives without any disabilities
[tandfonline.com]