The only known treatment is with a monoclonal antibody known as Eculizumab (Soliris). This antibody inhibits the portion of the immune system responsible, allowing her blood count, kidneys and other organs to recover. Since this antibody is not produced by her own body, it has to be given to her on a weekly basis, intravenously, along with kidney dialysis three times a week. Both will be tapered back after a few months depending on organ response.
Soliris was invented only ten years ago, and the treatment costs over $7,000 per dose. Only about 1 in every 2 million people are diagnosed with aHUS. Without treatment, it’s fatal. In Shanna’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 bout with aHUS resulted in a hospital stay of 2 weeks, including 3 days in ICU. This included multiple blood and platelet transfusions and kidney dialysis every other day. At this point, it’s not clear when she will be getting back to work.
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