Webinar: Rare Disease Spotlight | aHUS diagnosis, treatment, management | AKF
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- Опубликовано: 7 сен 2024
- aHUS (atypical hemolytic uremic syndrome) is a rare disease that causes too many blood clots to form in your blood vessels. Because these blood clots block regular blood flow to your kidneys, your kidneys are not able to get rid of waste in your body as well as they should. Over time, your kidneys become damaged, which can lead to kidney failure.
On Rare Disease Day 2022, we are bringing together nephrologist, Bradley Dixon, MD, FASN, and patient advocate, Jeff Schmidt, for a discussion on aHUS. Join the conversation to:
- Learn more about aHUS, how it is diagnosed, and treatment options
- Meet an inspiring patient advocate and hear his journey as a parent of a child with aHUS
- Find out what to ask your health care team
Support for this educational program is provided in part by Alexion.
Guest speakers:
Bradley Dixon, MD, FASN
Dr. Dixon is currently an Associate Professor of Pediatrics and Medicine at the University of Colorado School of Medicine and Children’s Hospital Colorado. Dr. Dixon’s clinical interests focus on complement-mediated renal diseases such as atypical hemolytic uremic syndrome.
Jeff Schmidt
Jeff is a member of the aHUS Alliance, a global organization that supports those affected by aHUS around the world. He has a daughter whose aHUS triggered in 2011. In 2014, he became passionate about helping the global aHUS community after learning about a teenager in Australia and a family in Canada who were trying to gain access to immunosuppressive drugs. This led to him joining the aHUS Alliance in 2015.
Two things to know
1.aHUSis a genetic disease of the complement system that can affect many different organs in the body and can affect each person differently.
2.Complement-targeted medicines such as eculizumab and ravulizumabare highly effective in the treatment of aHUS, and many new options for treating aHUSare in development.
Two things to do
1.If you have been diagnosed with aHUSand are not on treatment, monitor your urine for blood and protein and check your blood pressure regularly for signs of relapse.
2.Connect with other patients, families, and medical experts in the vibrant aHUSand rare disease community. There are many people within reach!
Learn more from AKF at : www.kidneyfund...
When i was 2 years old i was diagnosed with aHUS i was in ICU for three months im also O- blood type so transfusions were scarce where i was located at the time. i has the 11th case ever known. i was studied the whole time after 3 months there wasn't a organ that hadn't started bleeding even my eyes started bleeding i was tested every hour or two and i was black and blue from all the blood-work being done. my doctor had told my mom that there was absolutely nothing that they could do they didn't even really know what it was being the 11th case known and that she needed to start planning my funeral. my uncle, my aunt, and my mother went to the chapel and prayed after a few more days went by and the grace of GOD the testing started coming back with more normal levels after the 3rd or 4th day i was literally walking out with no symptoms no abnormal levels and 25 years later i am doing research on this very rare disease
kaylei, there is a way that I can talk to you?
Kaylei my son has also been diagnosed with aHUS. Any findings from your research.
Hi, was very interested in your comment. My daughter has just been diagnosed with ahus at 10 months old. It's really great to hear that your doing well 25 years later.
Praise GOD
OMG DOCTOR DIXON TELL HIM I SENT THIS MESSAGE HE TREATED ME AT CINCINNATI IN CHILDRENS !!! Thank you doctor much love ❤️❤️❤️
I had it at age 3 and again at age 46 in May 2023.
I'm 51 and just got the diagnosis.
What is the role of plasma infusion ev very 2 wks if complement inhibitors medications are not available??
is it important to do genetic test before starting treatment as we don't have genetic testing in our country?