Alagille Syndrome

The underlying issue in any Social Security disability case relates to whether you can perform a full day’s work in a normal work environment.  Alagille Syndrome, a complex multisystem disorder involving the heart, liver, kidneys and skeleton can support a claim for disability.

Perhaps the most common argument that I use in my practice to win disability claims looks to my client’s capacity to perform reliably and consistently in even a simple, one or two step entry level job.  This argument is called a “functional capacity” argument.  In the Alagille’s patients I have represented, chronic fatigue brought about by liver or heart complications usually serves to greatly reduce an Alagille claimant’s capacity.

At this point, there is no “listing” for Alagille syndrome:

  • the “genitourinary impairment” listing at 6.00 considers kidney diseases and liver diseases but does not mention Alagille syndrome, even though Alagille patients do suffer from bile duct paucity

It might be possible to argue that an Alagille claimant’s decreased liver function equals the listing at 5.05 or 5.09
I have not yet appeared at disability hearing in an Alagille’s case in which a medical expert has been called.  It would be interested to learn whether one of these medical experts would evaluate an Alagille’s disability case in terms of a listing.

Until that happens, therefore, I will continue to present these cases to a judge by arguing that my client’s capacity to perform reliably 8 hours a day, 5 days a week has been compromised by fatigue, low energy and a need to take frequent unscheduled breaks.

In my experience the factors that judges consider when evaluating an Alagille’s case include:

  • definitive diagnosis – as this condition is a genetic disorder, there should be a firm diagnosis either through genetic test results or conclusive clinical evaluation
  • severe symptoms
  • most Alagille patients experience narrowing of the peripheral pulmonary artery and its branches leading to high blood pressure, cardiac insufficiency and fatigue
  • many Alagille patients suffer with digestive issues because of liver issues such as cholestatic liver disease (often caused by too few bile ducts and decreased flow of bile);  this also results in fatigue, and can be documented with abnormal liver enzyme lab test results
  • indications of kidney and/or liver transplant

Because Alagille Syndrome is a genetic disorder that is degenerative and for which there is no cure, most disability judges have been willing to accept a claimant’s testimony as credible regarding fatigue and low energy levels.

Case Studies for Alagille Syndrome cases:

Alagille Syndrome Case Study #1: 34 year old female with past work as a cashier, retail sales clerk, bank teller and veterinary technician