Do you have any worries about your disease? Are you struggling to find accurate, reliable information? Do you have concerns about your diet, pain management or access to treatment? Then join our expert forum week and get your questions answered!
Our Expert forum will take place on PatientsLikeMe on 15-19 February. The theme is challenging misconceptions surrounding AKU. We are regularly contacted by AKU patients, who have very little support and understanding of AKU in their country and we want to give our patients the opportunity to speak to AKU experts!
To join you need to have set up a free PatientsLikeMe account here. Once you have set up an account, you will be able to join the AKU community and connect with other patients in the online forums.
During the expert forum week, 3 AKU experts will sign up as guests on the forums and answer your questions. You can ask questions at any time and our experts will respond to you as soon as they can!
We have 3 fantastic AKU experts confirmed for the week:
Shirley is our AKU dietitian, who has been working with AKU patients at the National Alkaptonuria Centre (NAC) since it opened in 2013. Patients who attend the NAC have access to off-license nitisinone and Shirley works with them to monitor their protein intake. She is very knowledgeable on AKU diet and is keen to stress to importance of maintaining healthy levels of protein.
Dr Andrew Jones
Andrew is a consultant in Anaethesia and pain medicine and has been providing pain management to patients attending the NAC since 2014. He is an expert on AKU pain and patients have fed back that the addition of pain management at the NAC has made a massive difference.
Dr Mohammed Alsbou
Mohammed is a doctor who has treated many AKU patients in Jordan, a country where AKU is very prevalent. Mohammed set up and runs the AKU Society in Jordan and is very knowledgeable on AKU research, access to treatment and support available for our international patients.
The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena.. ...more
On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients.. ...more
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