Links on Alport Syndrome, Dialysis, and Kidney Transplant

Alport Syndrome Information and Resources

• Alport Syndrome Foundation: https://alportsyndrome.org
  Essential organization for AS resources and support for people with Alport Syndrome.
• Natera 'Renasight Panel': https://www.natera.com/organ-health/renasight-genetic-testing/patients/
  Can diagnose Alport Syndrome without biopsy. Consider if you have blood in urine or reduced EGFR with unknown causes. Loss of hearing and eyesight are other AS symptoms. This test led to my AS diagnosis.
• National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/alport-syndrome/
  Alport Syndrome Information from NORD.
• National Kidney Foundation: https://www.kidney.org/kidney-topics/alport-syndrome Alport Syndrome Information from NKF.

Dialysis Information

• Choosing Dialysis Type (National Kidney Foundation): https://www.kidney.org/kidney-topics/choosing-dialysis-which-type-right-me
• Home Dialysis Considerations: Dialysis Patient Citizens Education Center
• Hemodialysis & Peritoneal Dialysis Info from: National Institute of Diabetes And Digestive and Kidney Diseases (NIDDK):
      Hemodialysis Info
      Peritoneal Dialysis Info

Kidney Transplant Resources

• National Kidney Transplant Waitlist & Wait Times: https://www.kidney.org/kidney-topics/kidney-transplant-waitlist
• UNOS – Organ Procurement Organizations: https://unos.org/
  Important to understand their role in organ donation process.
• Center Data/Reports (OPTN Data): https://hrsa.unos.org/
• Current OPTN Regions: https://hrsa.unos.org/about/regions/
  Understanding regional role in organ donation process.
• Transplant Wait Times (Scientific Registry): https://preview.srtr.org/decision-tools/kidney-transplant-waiting-times/

Future Transplant Possibilities

Two promising developments I'm following:

1: UCSF Kidney Project – Bioartificial Kidney: https://pharm.ucsf.edu/kidney

2: NYU Langone Clinical Trial – Porcine Kidneys: Gene-edited pig kidney transplants from United Therapeutics

Diet

• Know what you're eating and eat healthy food.
  Many inculding myself belive this is as important as medical care. You don't need to go vegan like I did, but it helped me noticeably. (Not entirly vegan; I eat some salmon for Omega 3s since supplement regulations are looser than I am comfortable with and a full spectrum of Omega 3s are important.)

To help you understand what you are eating:

1. For labeled foods: FDA Nutrition Facts Guide

2. For unlabeled foods: Google "nutritional value of [food]" or use apps like www.nutritionix.com

3. Get a renal dietician: Google "renal dietician {your condition}". Sure you can find lots of "renal friendly diets" advertised and found on the internet. Unfortunatly there no such thing as a one-diet fits all for kidney health. Your best diet depends upon all the factors of your specific condition. I went to a renal dietician who was familiar with Alport Syndrome after I was confused by conflicting information, and it changed my health very noticably. A good dietician does not replace medical care but made a huge difference for me together with medical care.