Sudden Numbness, Lost Kidney Function Leads to aHUS Diagnosis for Mother

March 3, 2016

The day it happened, I was waiting for my daughter to come home from preschool.

I was waiting with my son on the street when suddenly my left side went numb.

I fumbled to quickly called my babysitter to help bring my daughter inside from the carpool. I found my doctor’s phone number and called immediately. He told me to come in right away. I dropped off my son and drove over.

After a quick exam she looked concerned and recommended I go to the emergency room. She had done tests on my blood and urine and the results were not good.

So my mom drove me to the ER at St. Francis in Chicago and after a lot of doctors and nurses came by and asked me all types of questions, I was admitted to a room. There was no diagnosis, I was just poked a lot and seen by various doctors until we told my neighbor, who is a doctor at Evanston, what was going on and that they were still sending my blood out to get results instead of doing so right there on site. When the drs didn’t know what was happening, our neighbor said if we didn’t move quickly, I would be leaving the ER in a body bag
We quickly changed hospitals the new consensus was that I should recieve PlasmaPheresis for several months. It actually seemed to be helping my symptoms and gave us time to do more research. I had biopsies, met with very well-recommended doctors and consulted with them about my kidney function. At this point it was compromised to half of what it should normally have been. Thank goodness my currenty hematologist took me on as a patient.
My illness brought my family together many times because they were not going to lose me not matter what! Having their support and having them in my corner felt great. Dr Grinblatt, my hematologist, then discovered i had something called aHus/ttp. It was a very rare disease and not much is known about it.
I now get treatment every 2 weeks by IV for 35 min a time and then get to go home and get on with my day and with my life like nothing is wrong w me.
That is my story, and aHUS is my rare disease.


| What is aHUS? |

atypical Hemolytic Uremic Syndrome (aHUS) is a rare, life-threatening, genetic disease. that can damage vital organs such as the kidneys, heart, and brain. In patients with. aHUS, blood clots form in small blood vessels throughout the body, a process known as. systemic thrombotic microangiopathy, or TMA.

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