This summer, we are looking to update our AKU recipe booklet. We invite patients to send in their favourite recipes, which we will adapt and add to our collection. If you have any ideas, email Lesley at [email protected].
The National Alkaptonuria Centre (NAC) in Liverpool gives English and Scottish AKU patients a drug called nitisinone. Nitisinone is a very promising treatment. It stops an acid called homogentisic acid building up in the blood, limiting the damage done by AKU. However, it does have side-effects. It stops the breakdown of an amino acid called tyrosine, contained in the protein that we eat. Tyrosine therefore builds up in the blood. In a very few cases, this can cause eye problems and skin rash.
For this reason, it is important that patients taking nitisinone keep an eye on their tyrosine levels. Luckily, the NAC has a specialist dietitian, Shirley Judd, who can help with this. She advises patients as to what they should eat, with a particular focus on controlling protein. Shirley stresses, though, that this is a controlled protein diet, not necessarily a low protein diet. The amount of protein each person should eat depends on their weight and previous protein intake.
Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like.. ...more
A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behin.. ...more
We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patie.. ...more
Yesterday was the annual Garrod Day Coffee Morning. We celebrated Sir Archibald Garrod&.. ...more