AKU Society

AKU is a painful disease, and it can be worrying to think about the damage it will cause to your body. However, we have several methods that we recommend to patients to minimise joint pain and to hopefully delay some of the worst aspects of the disease.

AKU makes your cartilage and bone brittle. Therefore it is best to avoid putting too much stress on your joints. This does not mean that you should avoid exercise completely; it can still be very beneficial. So, we recommend that you avoid some exercise that put additional strain on your joints (boxing, football, rugby, martial arts) and instead choose more gentle exercise that should minimise the damage to your body (such as swimming, yoga and pilates)

This has been shown to help patients with oseteoarthritis. As it has a similar effect to patients, we believe that physiotherapy could help AKU patients. We are undertaking a trial at the Royal Liverpool University Hospital to determine the best techniques. We'll let you know the results as soon as the trial concludes.

In the Treatment sections, you'll see there have been ideas about using a low protein diet to treat AKU. We do not believe that this is effective, and not worth the psychological harm of a severely restricted diet. However it is true that AKU is due to the incorrect metabolism of a protein, tyrosine. Therefore, eating excessive amounts of protein may cause harm to an AKU patient. So we recommend that you are careful with how much protein but not to restrict it completely from your diet - for example try replacing red meats (beef) for white meats (chicken). 

Your doctor should be able to prescribe you painkiller medication to help handle the pain associated with AKU. This is something that you should discuss with your doctor, as each patient will have different requirements and so may need specific painkillers. 

However we have collated 10 simple ways you can try to manage the pain yourself without the use of prescribed medicine:

1.    Try a TENS machine

2.    Hydrotherapy
3.    Heat bags/ Ice packs
4.    Distraction- watching something that makes you laugh
5.    Relaxation/Meditation/Hypnosis
6.    Visit a Pain Management Clinic
7.    Use a Biofeedback machine
8.    Acupuncture
9.    Socialise – talk to others
10.  Yoga/Stretching