My name is Johann Kerlow. I am 59 years old and my family and I have been dealing with aHUS since 2006 before we even knew anything about aHUS.
My middle son Jeff was in his first year of university when he got flu like symptoms and went from bad to worse. A seemingly normal healthy active young man lost his kidneys in 24 hours and almost lost his life. For the next year and a half he was fighting for his life and on dialysis and eventually his doctors advised him to have a kidney transplant. I was not a match but fortunately my husband was and they had transplant surgery on June 7, 2007. It was successful and he is very healthy to this day.
In 2014 I was a healthy and active person and was in need of a total knee replacement in order to continue my active lifestyle as I still enjoy skiing very much. After the surgery I went into a downward spin similar to my son. I got very sick and was transferred to Toronto General Hospital where I was diagnosed with aHUS and heard about this disease for the very first time. While in the hospital I was receiving 14 units of plasma daily and receiving 4 hours of dialysis as well. My specialist was aware of my diagnosis and knew there was a drug, eculizumab (Soliris), that would help save my life and save my kidneys but the government refused to give me the drug for 3 months. During this time I lost the use of my kidneys and they were permanently damaged. Our family together with friends and help from aHUS Canada did a lot of advocating and were able to pressure the government into changing their policy and now when someone is newly diagnosed with aHUS their specialist can access the drug more quickly. Hopefully this will help to prevent others from losing the use of their organs in the future.
aHUS is a genetic disorder and all 3 of my sons also carry the gene. I am now doing home dialysis in the evening, 2 nights on and one night off. I was on eculizumab for 2 years and the day that I got my first infusion was the last day I no longer suffered from episodes of pancreatitis, one of many possible complication of aHUS. Thankfully I have my energy back and have started to golf and ski again. The government stopped my eculizumab in May of 2016. Since that time I have not had a relapse and I feel fine and I am now undergoing testing in order to go forward with a kidney transplant and I hope to get eculizumab before and after the transplant surgery.
I am looking forward to getting my life back to normal and being able to travel again. I try not to define my life around aHUS. I feel that it is just a part of my life that I have to go through and I have a lot to be thankful for as both my son and I are alive and my husband recently had a heart attack and is also doing well. We are survivors and we live everyday in gratitude knowing that we are still alive and carrying on.
To learn more about Johann’s story, attached is a link to a short video that was published in 2015: https://www.youtube.com/watch?v=DXMPWWD6gOM
Thank you Johann 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.