Every month has multiple “awareness” opportunities, however, not every topic is as well-known or widespread as others. For some people, an awareness month is a chance for them to feel seen, and to help bring a voice to their lesser-known condition – this month is one of those months. March is Alport Syndrome (AS) Awareness Month. If this rare genetic kidney disorder isn’t something you or someone in your inner circle lives with, it might be off your radar. This month we get to share why this rare disease needs a larger and louder voice.
Thousands of people worldwide know exactly what AS is because they are living with a rare hereditary condition that is better known as progressive kidney disease. In addition, AS also comes with other struggles such as hearing loss and eye abnormalities, making this genetic disorder one that affects one’s way of being, seeing, hearing, feeling and just managing day-to-day life.
The National Kidney Foundation describes the cause of this disease on their website (https://www.kidney.org/atoz/content/alport) as, “an inherited disease, which means it is passed down through families. It is caused by changes in your genes (mutations) to a protein called collagen. Collagen is important to the normal structure and function of the kidneys. Changes to collagen can also cause problems with the eyes and ears. That’s because collagen helps maintain healthy tissue in the eyes and ears.
While Alport Syndrome is relatively rare and its prevalence remains unclear, Alport Syndrome News (https://alportsyndromenews.com/prevalence-of-alport-syndrome/) shares a deeper dive into the statistics they do know, which is that one in every 50,000 births will result in an AS diagnosis. They think that less than 1% of adults and 3% of children with end-stage kidney disease have AS according to the U.S. Renal Data System (USRDS) reports. In Vermont, like many other states, individuals and families may be impacted by Alport Syndrome, especially as it is hereditary. In Orleans County, Vermont specifically, resources and support for individuals affected by Alport Syndrome are available to provide assistance and guidance through organizations such as the National Kidney Foundation and the Alport Syndrome Foundation. These organizations offer valuable resources, support groups, and educational materials for individuals living with Alport Syndrome, which is important for those who may feel alone in a diagnosis that is less common or well-known in their communities.
If you are concerned about AS, Kidney Disease, or experiencing symptoms such as blood in the urine, high blood pressure, or hearing loss, it is essential to seek medical attention promptly. While this condition is very rare, many other conditions could be the culprit and may easily be supported by measures that can help with the right care. With most health concerns, early diagnosis and treatment can help slow the progression of kidney disease and improve outcomes for individuals with Alport Syndrome or other kidney conditions. Don’t hesitate to talk to your healthcare provider about your health concerns or changes in your symptoms.
This month celebrates the awareness of many other more common conditions such as colon cancer, HIV, brain injuries, and more. Yet, when we take the time to learn about something new and start the conversations, we may be able to help someone else, or even ourselves to get the proper care we need. This month as we learn about, talk about, and how to bring more awareness to Alport Syndrome, we also bring more power to those who may feel powerless. We can’t always control how or why our bodies do what they do, but we can control how we bring support, especially for these rarer conditions. Let’s raise our voices for the rare!
Mary Hoadley
Director of The Wellness Center