Together for ALGS Awareness Day

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Only 1 in 30,000 children are born with ALGS each year^1,2 This January, we are standing with the Alagille Syndrome Alliance to help raise awareness of this rare cholestatic liver disease and be #ALGSAware.

“People don’t talk enough about the emotional strain this condition puts not only on us as parents, but on our kids. We not only need to worry about the medical implications – but need to closely watch the emotional impact ALGS can have on the kids as they grow.” – Ashley, parent of children with ALGS.

Alagille syndrome (ALGS) is a rare disease usually diagnosed in the first year of life, with symptoms appearing shortly after birth or in early infancy.¹ While it can affect multiple organs in the body, the liver is most commonly involved, often leading to symptoms such as yellowing of the skin (jaundice) that doesn’t resolve itself within a few weeks, pale stools and constant itching.^1,3

At Ipsen it is our ambition to develop treatment innovations that we hope will bring about positive change, improving the lives and outlooks of those affected by rare cholestatic liver diseases, like ALGS.

ALGS is caused by a genetic mutation which can be inherited from a parent with at least one of these mutations, or can happen spontaneously before birth.^1,4

These mutations disrupt the signalling pathway that plays a key role in the formation of some organs and tissues, including the liver, where it results in a reduced number of bile ducts  developing, known as bile duct paucity. This reduction in bile ducts inside the liver decreases the flow of digestive fluid bile through the liver to the intestines, leading to a buildup of bile acids, which can result in liver scarring if not effectively managed.³

“Life with Alagille syndrome means different challenges every day. For our family, meeting and sharing life experiences with others within this community gives us and others a sense of hope and support.” – Eli and Joy, parents of a child with ALGS.

For many liver diseases, for which more than 100 are known⁵, the journey to diagnosis can often be long and difficult due to lack of awareness of the condition and the unspecific nature of many visible symptoms, such a debilitating fatigue or relentless itch. The emotional turmoil that parents experience when their child or children are impacted by these diseases is distressing, and the journey from symptom suspicion through to diagnosis, treatment and ongoing management of care can affect the entire family. Having a community to share resources, experiences and advice is crucial, and the Alagille Syndrome Alliance (ALGSA) have done this exceptionally well.

Working together with the community we can support action to raise awareness of the disease, to improve diagnosis and to advocate for positive changes that improve the lives and outlooks of those affected. We’re very proud to support this patient organization on ALGS Awareness Day (24 January) and every day, to help raise awareness of this rare liver disease and amplify the patient / caregiver voice. To learn more about the ALGSA and hear more stories from those impacted by ALGS, visit https://alagille.org/get-involved/family-stories/

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