Alagille Syndrome Case Study #1: 34-year-old Female With Reduced Liver and Kidney Function and Symptoms of Extreme Fatigue and Low Energy
Claimant: 34-year-old female
Past work: Veterinary Technician, Bank Teller, Retail Sales Clerk, Receptionist, Fast Food Cashier
Education: High School graduate + B.A. in Biology
Hearing strategy: In reviewing the file, it was easy to tell that this case was a winner. Alagille Syndrome is a genetic disorder that causes a reduced number of bile ducts in the liver. Alagille patients also have smaller than normal arteries near the heart, resulting in high blood pressure, spinal bone malformation, and kidney issues.
In the client’s case, she had apparently been diagnosed with Alagille Syndrome as an infant and had undergone surgery on her liver to improve bile flow. However, she contends that no one ever told her about this diagnosis or the genetic implications until 2006, when she sought medical treatment because of extreme fatigue and pain in her kidney region.
The medical records indicate that my client’s kidney function is greatly reduced to the point where she has a borderline need for dialysis, and as of 2006 her treating physicians have suggested that she may need a kidney and liver transplant.
The client has not had insurance since 2007 and has not been able to afford specialized medical treatment. At present, she continues to experience a great deal of fatigue and low energy. Because of this, she needs to sleep 3 to 4 hours during the day in addition to her rest at night.
Hearing Report: The judge opened the hearing by introducing himself, the hearing reporter and the vocational witness. He explained that the hearing would be conducted informally and that both he and I (Jonathan) would be asking questions.
The judge then asked me to make an opening statement. I briefly explained that this case involved an individual with Alagille Syndrome, which was a genetic disorder that resulted in extreme fatigue. I also advised the judge that the claimant had been attempting to perform part-time volunteer work, but was having difficulty doing so. Apparently, the judge seemed to have read the file and understood the issues since he nodded his head in agreement.
Claimant’s Testimony
The judge then asked a few preliminary questions about where the claimant lived (house or apartment), confirmed the address and then asked her about the volunteer work she had been attempting. My client testified that she was trying to perform volunteer work 3 days a week and that over the course of the past month, there were only two days in which she was able to put in 6 hours – the rest of the time she had to go home after 3 hours because of fatigue.
The judge then asked me to take over the questioning so I asked my client to explain what Alagille Syndrome is and how it affected her. I elicited testimony about fatigue and her need to sleep three to four hours every day. I also prompted her to testify that she would likely need a liver and kidney transplant in the near future and that despite her desire to work she simply did not have the energy to do so.
The judge asked a follow up question about how an average day goes for the client. My client testified that she gets up at around 7 in the morning, takes a small breakfast, then goes back to bed until 9 am. She then spends her day watching TV or performing volunteer work until about 1 in the afternoon. She will then take a nap until 4 pm and then spend time with her father before bathing and going back to sleep by 10 in the evening.
Examination of Vocational Expert
The judge then turned to the vocational witness and asked him to classify the claimant’s past work. Several of the jobs were classified under skilled or semi-skilled and ranged from sedentary to normal activity.
The judge then posed the following criteria:
Assume that we have an individual limited to sedentary work with the following limitations:
- she can stand and walk for no more than 30 minutes at a time during a work day
- her standing and walking is limited to 2 hours or less during the course of the day
- she needs to take a two-hour rest break away from the work site every day
The vocational witness testified that based on these limitations, my client could not perform past work, and that she would not be able to perform any other work in the regional or national economy.
Favorable Bench Decision Announced
At that point, the judge turned to my client and announced that he would be awarding benefits. He then read a “bench decision” setting out the reasons for his decision. In the bench decision, the judge stated that the evidence proved that the claimant had a genetic disorder which caused kidney, liver and heart problems. The mentioned organ impairment showed symptoms consistent to what the claimant expressed. With this, it can be noted that credibility is present as shown in the consistency of the client’s expressed condition and the medical symptoms of the illness.
Analysis: Because the medical condition is a genetic disorder that compromised the client’s health, the judge appeared to be predisposed to finding in favor of the client. The client appeared a credible witness as she focused on the observable symptoms such as fatigue and low energy. This case should have been approved years ago at the administrative level but was not because the State Agency adjudicator who reviewed the file seems to have never heard of Alagille Syndrome. Fortunately, the assigned judge is good and did not waste much time in awarding benefits.