A proper diet is crucial to maintaining proper renal and overall health. Potassium is a very important mineral in the body that most individuals are only vaguely aware of until their renal condition declines and are told by their doctor/dietitian to limit its intake.
Over the past nine years, ASF has successfully created a landscape that encourages industry, academia and the government to invest in studying Alport syndrome. The result can be seen in the increased number of potential therapies “in the pipeline” to treat Alport syndrome.
In response to requests for more face-to-face interaction with other families affected by Alport syndrome, ASF has hosted several Alport Family Meetings in 2016. Participants have left feeling empowered and connected to the Alport community.
ASF is taking steps to better incorporate the patient perspective into our research goals. To better understand the daily and long-term impact that Alport syndrome has on patients and the main concerns patients have about the disease and its progression, we have created a survey.
Many patients with Alport syndrome will face decisions about life-sustaining treatment and the more we know about those treatment options, the better we will be able to determine the best choice for ourselves and our family.
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. Meet two people who turned their diagnosis into an opportunity to help others cope with the challenges of living with Alport syndrome.
Alport Awareness Month begins in less than a week on March 1. March is also National Kidney Month, providing our community with plenty of reasons to increase awareness of Alport syndrome and the risks of chronic kidney disease. With your support, we can make this the single largest awareness campaign in the history of our organization!