Andrea's aHUS Fund

My sister Andrea has been diagnosed with a very rare disease known as "Atypical Hemolytic Uremic Syndrome", or aHUS.  It's caused by the complement (part of the immune system) attacking her blood cells, causing them to pop. The fragments of the popped cells clot up the kidneys, and can clot up other organs like the brain. Even though there is clotting, the blood is also thinned, making breathing harder and harder, so there's no easy fix.

The only known treatment is with a monoclonal antibody known as Eculizumab (Soliris). This antibody inhibits the complement proteins responsible, allowing the blood count and kidneys to recover. Since this antibody is not produced by her own body, it has to be given to her on a weekly-to-monthly basis, intravenously.

Soliris was invented only a few years ago, and the treatment costs about $300,000-$500,000 per year. Only about 1000 people per year in the US are diagnosed with aHUS, and have a 5 year survival rate of 30%. However, in Andrea's case, doctors said without the Soliris she would have died in a few days. It is the only real long-term treatment available, and has allowed people to fully recover even after being on dialysis.

On top of the Soliris cost, the hospital bills are exorbitant. Her first bout of aHUS resulted in a hospital stay of 3 weeks, with daily blood transfusions, and plasmapheresis. It's not clear when she will be getting back to work.

She was released from the hospital after 3 weeks, but not even a week later was readmitted  due to a high fever from an infection in her kidneys.

If you can donate, please do. Any amount will be appreciated. Please share this page with as many people as you can. I'm going to put this in as many places as I can.