According to a story from The Chicago Tribune, Darnesha Bankston, age 23, was rushed to the hospital just before Christmas last year with a bunch of severe, life threatening symptoms. She was able to be stabilized by doctors, and her life was saved. Darnesha says that her symptoms appeared practically out of nowhere. After she was in stable condition the hospital diagnosed her with an extremely rare kidney disease: atypical hemolytic uremic syndrome.
About Atypical Hemolytic Uremic Syndrome
Atypical hemolytic uremic syndrome (aHUS) is a very rare, life threatening disease that causes system-wide effects. This disease only affects two of every million people in the US. It is unclear exactly what causes the disease, but there genetics appear to play a role. The syndrome can appear both on its own or alongside other diseases, such as systemic sclerosis and glomerulopathy. Comorbidities are present in about 25 percent of cases. Symptoms of aHUS are vague and systemic, and can include swelling, nausea, vomiting, fatigue, confusion, abdominal pain, diarrhea, anemia, heart attack, stroke, high blood pressure, coma, kidney failure, liver necrosis, and pancreatitis. This is a deadly disease; about a third of patients die or have to start dialysis after their first episode of symptoms. If the symptoms relapse, about two thirds of patients either die, must start dialysis, or suffer permanent kidney damage. Click here to learn more about aHUS.
An Expert on Hand
The syndrome can be very difficult to diagnose, but Darnesha was fortunate because Franciscan Health, the hospital that saved her life, had Dr. Tauseef Sarguroh, a nephrologist, on staff. Dr. Sarguroh was thankfully quite familiar with the latest research about aHUS, and as a result, he suspected it as a possibility from the beginning. It was the doctor’s knowledge about the disease that prompted him to recommend that Darnesha get treated with eculizumab, a drug which is approved for treating the syndrome.
Next Steps
For now, Darnesha is still taking the eculizumab, but the medical team eventually aims to wean her off of the drug. However, this is not as easy as it sounds. This is because there just isn’t much data available that can tell the team when it is safe for them to do so. Dr. Sarguroh says that they doctors will use their “best clinical judgment” to determine when it should be safe for her.
