https://childliverdisease.org/disappointment-at-nice-initial-decision-on-alagilles-drug/?utm_source=rss&utm_medium=rss&utm_campaign=disappointment-at-nice-initial-decision-on-alagilles-drug Just another WordPress site Wed, 07 Aug 2024 20:46:16 +0000 hourly 1 https://wordpress.org/?v=7.0 https://childliverdisease.org/disappointment-at-nice-initial-decision-on-alagilles-drug/#comment-6898 Wed, 07 Aug 2024 20:46:16 +0000 https://childliverdisease.org/?p=37565#comment-6898 My 2 year old grandson has Alagilles syndrome, he has been on Maralix for nearly 4 months. The difference it has made in reducing the itching is unbelievable. Initially he was away from his sister for 4 weeks before diagnosis He now sleeps most of the night whereas he was awake maybe 6-8 times with constant itching, crying, unsettled. The disturbed sleep was a problem for his 8 year old sister and impacted in his parents who both gave demanding jobs. We really would like other parents/children to be given the opportunity to access this drug

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