Justin Dupe’s aHUS story is written by his mother Dorita Pelletier.
In August 2012, twelve-year-old Justin wasn’t feeling well. We thought he had gotten the flu. He had diarrhea, fever, he was vomiting and he was very weak. I went to our local pharmacy and got some medications after talking to the Pharmacist. After giving him medication for 2 days he kept getting worse so I consulted with my Pharmacist again and he suggested we go to the hospital.
Once we got to the hospital they brought us in right away. With the big bright lights at the hospital, the nurse saw that Justin’s color was yellow. At my house, the lights were not as bright so I had never noticed that. Justin’s jaundice was because his liver was not working well. They ran a lot of tests and his urine sample was black. I could not believe that it was pee. So after some testing, they said they were sure it was E-coli and transferred us to the Peterborough hospital.
From there, after undergoing more tests and communicating with Sick Kids hospital, we were transferred to Sick Kids. They put him on dialysis the next day after being admitted to Sick Kids as his kidneys were not functioning and his urine was black. I went many nights without sleeping that week. Once at Sick Kids hospital, Justin received blood transfusions and hemodialysis. Justin was so scared. He didn’t want to eat food because he was scared that was the reason that had caused this illness. Some of the tests while at Sick Kids hospital were spinal taps, MRIs, and some eye tests as the veins in his eyes were bursting and his eyes were bloody. He also had ultrasounds, echocardiograms, and he had two PIC lines installed, one in the groin and one in the chest.
After 2 weeks at the hospital, they concluded that it was not E-coli because usually after 10 days patients would start feeling better. The doctors sent many blood samples to the States. After almost 3 months in the hospital the doctors had discovered what he really had; atypical HUS. Once he had the proper diagnosis, a short while later, the physicians started treating him with eculizumab. Eculizumab at that time was not approved for aHUS use in Canada but was used as part of a clinical trial for aHUS patients. Justin was one of the first patients to become part of the clinical trial and once on the treatment, Justin started to feel a lot better. He was in the hospital for a long time but finally, in December we were able to go home.
He was in the hospital from August 2012 to Dec 2012. But soon after he was home he had a relapse on December 24, 2012, and was again hospitalized for a month. He has had a couple of relapses that required dialysis and we would be in the hospital for about a month each time. He has also had pneumonia several times. Justin continued to get eculizumab and his kidneys recovered.
The first year was very rough. But today Justin is still doing good and continues to receive eculizumab twice a month at the hospital. I am so grateful that they have this medicine.
Thank you, Dorita Pelletier and Justin Dupe for sharing your story. If you are interested in sharing your story of how aHUS has impacted your life, please contact us at firstname.lastname@example.org.