We observe Alport Syndrome Awareness Month in March every year to spread the word about a disease that affects the lives of the people we love, both young and old. Creating awareness about this rare genetic disease helps garner desperately needed support to fund research and provide treatments for those suffering from Alport syndrome. Alport syndrome affects one in every 5,000 to 10,000 people on the planet. It is an inherited disease without specific treatment or cure. Medication is usually given at the early stages to treat the symptoms and slow down kidney damage.
History of Alport Syndrome Awareness Month
Alport Syndrome Awareness Month is celebrated during National Kidney Month in March. During this month, the Alport Syndrome Foundation (A.S.F.) partners with other kidney-related organizations to create awareness of Alport syndrome, an extremely rare genetic disease that causes a decline in kidney function over time.
There is currently no specific treatment for Alport syndrome. However, according to the National Kidney Foundation, doctors may prescribe medications to slow the development of kidney disease. Through their efforts, the A.S.F. hopes to increase early and accurate diagnosis of Alport syndrome and emphasize the need for research and funding. Research is ongoing to understand Alport syndrome better and develop more effective treatments and cures.
In 2021, the A.S.F. presented a funding award of $132,000 to the Division of Nephrology at Washington University to support Dr. Jeffrey Miner’s laboratory as it carries out studies that would effectively treat patients with Alport syndrome. In 2019, patients shared black and white photographs of themselves for the Facing Alport Syndrome campaign organized by the A.S.F. They sent the pictures to medical professionals to provide a visual demonstration of how Alport syndrome affects people of all ages, genders, and backgrounds. Patients also shared the A.S.F.’s social media messages to raise awareness of Alport syndrome on social media.
Alport Syndrome Awareness Month timeline
Dr. Cecil A. Alport first identifies Alport Syndrome in a British family.
Sharon Lagas, the co-founder of the A.S.F., dreams about starting the organization after losing her brother to the disease.
Patients share black and white photographs of themselves to help medical professionals visualize how Alport syndrome affects different people.
The survey reveals that 51% of adults suffering from Alport Syndrome are misdiagnosed or incompletely diagnosed.
Alport Syndrome Awareness Month FAQs
How serious is Alport syndrome?
Research shows that 90% of males develop kidney failure by the age of 40 without treatment. This percentage is lower in females. Alport syndrome patients also typically experience other serious effects like hearing loss and eye abnormalities.
What is the life expectancy of someone with Alport syndrome?
Women with Alport syndrome tend to have a normal lifespan, even though they still experience negative symptoms. However, without treatment, men with Alport syndrome can experience end-stage renal failure and deafness by 40.
Can Alport syndrome skip a generation?
Women are typically underdiagnosed with Alport syndrome, causing the misconception that the syndrome skips a generation.
How to Observe Alport Syndrome Awareness Month
Join the A.S.F. and the world by creating awareness about Alport syndrome. In recent years, one of the most powerful ways of spreading messages worldwide is through social media. Share Alport syndrome-related content on your Facebook, Instagram, Twitter, or LinkedIn profile to spread the word.
Attend an Alport syndrome webinar
Webinars are a great way to learn about new topics and solutions to various life challenges. Attend the A.S.F.’s annual webinar, or feel free to organize one yourself and invite your friends and family. The goal is to educate as many people as possible about Alport syndrome.
Support fundraising campaigns
There is no better way to show compassion and support to another human being than giving a gift. Every penny you give could end up saving someone’s life. Donations to Alport syndrome campaigns are used to fund sensitization efforts and research to treat Alport syndrome.
5 Important Facts About Alport Syndrome
There is no treatment
Medications are only given at an early stage to treat the symptoms and slow the development of kidney disease.
It is an inherited disease
Parents pass Alport syndrome on to their offspring or descendants.
Different genetic types
There are three types of Alport syndrome: X-linked Alport Syndrome, Autosomal Recessive Alport Syndrome, and Autosomal Dominant Alport Syndrome.
All types affect kidneys
Alport syndrome damages the tiny blood vessels in the kidneys’ glomeruli, preventing the waste and extra fluid in the body from being filtered.
You lose a piece of your kidney
It’s helpful to diagnose Alport syndrome through a kidney biopsy — they use a special needle to extract a piece of your kidney to view it under a microscope.
Why Alport Syndrome Awareness Month is Important
We learn more about Alport syndrome
Alport Syndrome Awareness Month provides the opportunity to educate the world about Alport syndrome, creating the much-needed awareness for early diagnosis that could save someone’s life. People suffering from the disease speak about their life, opening up more discussions on the subject.
Funds are raised for research
Increased awareness often leads to funds, as the A.S.F. showed in 2021 when they presented a $132,000 funding award to Washington University. The foundation donated the money for research to treat Alport syndrome.
Valuable insights are shared
Campaigns like Alport Syndrome Awareness Month allow patients and experts to share valuable insights into Alport syndrome. For example, in 2021, the A.S.F. shared insights from their Diagnosis Stories Survey involving 240 patients, revealing that 51% of adult patients were either initially misdiagnosed or incompletely diagnosed.
Alport Syndrome Awareness Month dates