International Patient Workshop

20-Apr-2016

Our first International Patient Workshop took place in Liverpool on Wednesday 20th April. It was a fantastic workshop, bringing together the biggest collection of AKU patients, with patients attending from 13 different countries! Read our blog to find out more about the big day.

Meet Carolyn, an AKU patient from Canada, who is looking forward to attending our first International Patient Workshop in April!


Tell us abit about yourself and your AKU journey to diagnosis
I was diagnosed at a very young age because my nappies turned brown.  My aunt noticed and made a comment to my parents.  They had taken me to the paediatrician for another reason and happened to mention it as we were leaving.  Fortunately the locum GP had recently learned of AKU.  Tests were done on myself and my parents.

What would it mean for you at attend our international patient workshop? Because we are often our own advocates I try and stay on top of the current information and happenings with AKU.  I learned about the AKU Society in its infancy thanks to the Internet.  My husband is British so whilst living in the UK I was able to attend some events and often spoke with Robert Gregory.  For me the conference is a means to become more informed on AKU and in a way reinstating my hope for the future.

What support do you currently receive in your country?
Here, in Canada, I receive very little support in regards to having a rare disease.  I am often updating and informing my physicians of the disease.  I generally receive follow up care annually from a Nephrologist, Genetics Physician and am seen more often by a Rheumatologist.  They are there to monitor my progress and to help with appropriate care when symptoms arise or progress.  In my opinion, Canada is very reactive rather than proactive when it comes to rare diseases.  They like to play it safe which can be very frustrating.  From my understanding it currently takes another 4-5 years to receive medications for rare disease after they have been approved in other countries.  A lot can change in that time.

What do you hope to gain from the workshop?
I am hoping to gain a better perspective of the current studies and progress made with AKU treatments.  I am looking forward to learning valuable information from the workshops, as well as sharing and exchanging experiences with others living with AKU.  I'm also looking forward to the opportunity to connect with new and current friends that I have made through this journey.  I'm getting excited now! 

Please consider donating to our justgiving page to support more international patients like Carolyn attend our workshop!

International Patient Workshop
We are very excited to announce our International AKU Patient Workshop will take place on Wednesday 20th April in the conference facilities at Goodison Park, Liverpool!

This is our first international workshop and we are really excited to invite AKU patients from all over the world to receive support, learn more about their condition and meet and share experiences with other AKU patients!

Agenda
8.30 - 9 Breakfast and registration
9 - 9.20 Chair based exercise
9.20 - 10.20 Pain toolkit
10.20 - 10.40 Break
10.40 - 11.10 Pain management
11.10 - 12.10 Mental health in long term conditions
12.10 - 12.40 Physiotherapy in AKU
12.40 - 13.40 Lunch
13.30 - 14.30 Gait analysis
14.30 - 15.00 AKU research (session 1)
15.00 - 15.30 Healthy diet in AKU (session 1)
15.30 - 15.45 Break
15.45 - 16.15 AKU research (session 2)
16.15 - 16.45 Healthy diet in AKU (session 2)
16.45 - 17.00 Online communities

There will also be an opportunity for attendees to have a tour of the Everton stadium!

We have done a lot of fundraising to support UK patients and patients from around the world with travel and accomodation. Please get in contact with us to find out more information about how we can support you.

We hope to have an exercise booklet and DVD for all attendees as well as a booklet on low protein recipes.

To find out more information or to register to attend, please email [email protected].




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