Table 9.

HOW IT WORKS: Optimising your physical and mental health in Alport syndrome

What can I do for my health if I have Alport syndrome?
Lifestyle
Eat a diet low in salt (sodium chloride) and low in ultra-processed food. The ‘DASH’ diet, a ‘plant-based’ diet, and the ‘Mediterranean’ diet all have the most evidence for health benefits in kidney conditions A normal protein intake (0.6–0.8 mg/kg/day) is recommended. Protein shakes and/or excess protein should be avoided as this can damage kidneys further
Avoid smoking and excess alcohol
Avoid taking non-steroidal anti-inflammatory drugs (NSAIDS) such as Nurofen, Ibuprofen, Naproxen, and Diclofenac as these can be harmful to your kidneys in Alport syndrome
Move and/or exercise regularly with an emphasis on cardiovascular exercise for example walking fast, cycling, running, or swimming. Please note that bodybuilding can be harmful
Having a healthy weight will make you more likely to be eligible for a kidney transplant and prevent a more rapid decline in your kidney function
Prioritise good quality sleep and limit stress in any way that works for you
Check your blood pressure regularly (you can buy a home monitor or do this via your GP practice) and send your doctor the results at each visit or if the readings become higher
Look after your mental health by seeking social connection, helping others, adopting methods of relaxation and mindfulness such as mediation/journaling and engaging in creative and fun activities
Health care
Attend your kidney clinic appointments to help you manage any kidney-related symptoms (and necessary diet) as kidney function progresses, cardiovascular risk and prepare you for kidney transplantation if you need it
Attend any screening appointments you might be referred for (e.g. hearing and eye screening) so you can get information, support, and treatments if needed and continue to do this on a regular basis whether you need hearing aids and spectacles/glasses or not
It is very important to wear hearing aids as soon as there is any sign of hearing loss to protect your higher neural pathways and the function of the rest of your brain. Also, try to avoid very loud noises such as through headphones/near speakers to protect your hearing from further loss
It is also very important to wear spectacles/glasses at the earliest signs of visual focus issues to protect your higher neural pathways and brain function
We recommend regularly checking the website; https://clinicaltrials.gov and typing Alport syndrome into the search engine to find out what clinical trials are or are going to be recruiting. Contact details are clearly available if you have questions or if you wish to consider taking part
Family planning
Both women and men should discuss family planning with your kidney doctor early so that preparations can be made to ensure a safe pregnancy for mother and baby
It is helpful to have a genetic test before a person with Alport syndrome intends to conceive. Talking with a genetic counsellor about the risks for children and all available options is recommended including prenatal diagnosis and pre-implantation genetic testing if you might wish to consider these
ACE inhibitors (and potentially other drugs you might be taking) must be stopped prior to conceiving as they can cause malformations in the developing foetus