HWN Suggests

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…

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Featured

 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.

Articles of Interest

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.

Resources

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.