Alport Syndrome
Although I have my days, I keep smiling on. I have seen so many patients with defeat in their eyes. You have to fight on and never lose that sense of oneself - Kyle
image by: Alport Syndrome Foundation of USA
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Clinical practice recommendations for the treatment of Alport syndrome: a statement of the Alport Syndrome Research Collaborative
Alport Syndrome is a blessing?
On the face of it, that’s a pretty ridiculous statement. In my case, however, in some ways it has been because it steered me into the audiology profession that I dearly love and one that dramatically has a major influence on people.
In about the third grade I was diagnosed with Alport Syndrome. In my case it meant my kidneys did not function well and it greatly affected my hearing. I needed hearing aids, and after working with an audiologist and seeing how he impacted my life and others, my career path was set.
Sure there have been bumps along the road. While in college I had a kidney transplant and my father was the donor. Dad…
Resources
Embracing Alport Syndrome
Because Alport Syndrome nearly always leads to kidney failure and often has other serious symptoms, such as severe hearing loss, receiving a diagnosis is often difficult.
Kyle‘s Story
The day was June 6, 2008 and I was diagnosed with Alports Syndrome. A genetic disorder characterized by end stage renal failure which includes hearing loss and can affect the eyes. The only treatment for patients is kidney dialysis and the benefit of a kidney transplant, although this can cause problems.
Alport Foundation of Australia
In Australia kidney-related disease kills more people a year than breast cancer, prostate cancer or even road traffic accidents. Our aim is to raise the awareness of Alport Syndrome so that a greater number of patients and families affected by this genetic kidney disease will become aware of their condition years sooner than they might otherwise have been.
Alport Syndrome Foundation
The ASF MISSION is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and research. The ASF VISION is to conquer Alport Syndrome.
Alport UK
alport uk is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life. Drawing on our continuous learning from and collaboration with individuals, families and the scientific community, this website aims to facilitate a support and information network for all those affected by Alport Syndrome.
AlportStudy.com
Now is your chance - do your part to get involved. Contact a location near you to learn more about our ATHENA and HERA studies.
AlportSyndrome.ca
This website is intended to provide support for Alport Syndrome patients and families across Canada and help raise awareness of Alport Syndrome.
Cecil Alport: Naming the Syndrome
In 1927, Dr. Cecil Alport published a paper in the British Medical Journal in which he discussed his study of several generations of a family with what earlier physicians had called “hereditary familial congenital haemorrhagic nephritis.”
Clinical practice recommendations for the treatment of Alport syndrome: a statement of the Alport Syndrome Research Collaborative
We present clinical practice recommendations for the treatment of children with Alport syndrome who are not enrolled in clinical trials. Our goal is to promote early initiation of a standard therapeutic approach that will facilitate assessment of the safety and efficacy of the protocol. The treatment protocol is based on the reduction of proteinuria, intraglomerular pressure, and renal fibrosis via interference with the renin–angiotensin–aldosterone system.
Genetic Testing Registry
Alport syndrome is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities.People with Alport syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine (hematuria), which indicates abnormal functioning of the kidneys.
National Kidney Foundation
There are three genetic types of Alport syndrome. •X-linked Alport syndrome (XLAS) •Autosomal recessive Alport syndrome (ARAS) •Autosomal dominant Alport syndrome (ADAS)
NephCure
Alport Syndrome is a genetically inherited disease of the kidneys. It may also affect the inner ears and eyes. It is caused by genetic mutations of the collagen IV family of proteins. These proteins are a major part of tissue structures called basement membranes that are present in all tissues including the kidney, inner ear, and eye.
RareRenal.org
Most men with Alport Syndrome develop kidney failure in their twenties or thirties. Women tend to develop hearing problems later than men and are less likely to get kidney failure, although both can still happen in later life.
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