Alport Syndrome Information Day
My name is Rachel Lennon, and I am a Paediatric Kidney doctor based at the Children’s Hospital in Manchester.
On Saturday, 21st November, we hosted the 4th UK Alport Syndrome Information Day in Manchester. The event was organised by the charity Alport UK and was a very successful day. Alport Syndrome is a genetic condition that affects the kidneys, ears and eyes, mainly causing kidney disease and hearing loss. The condition usually runs in families, and it affects around 1 in 5000 people. We think there are around 20 families affected by Alport Syndrome in Greater Manchester.
The event brought together families with Alport syndrome and specialists in kidney medicine, genetics, research, eyes and diet. We had a series of short talks and plenty of time for questions.
Dr Melissa Stepney, a researcher from the University of Oxford, introduced a new project that aims to describe the experiences of patients with Alport Syndrome.
If you have been affected by Alports – she would love to hear from you so you can share your experiences of Alport Syndrome, what has happened to you, your thoughts and feelings, how you have found information, and how you made decisions, and anything else you would like to talk about. For more details, please see the attached flyer below or email her at melissa.stepney@phc.ox.ac.uk
For the younger members of the audience, we had a separate session on research, and we asked the following questions:
- Why research is important for Alport Syndrome?
- What are the types of research?
- What more needs to be done?
- How can patients get involved?
From these discussions, we made a timeline of research events that have been important in Alport Syndrome, and we all learnt something new. We all agreed that the pace of research in Alport Syndrome is going faster than ever; one of our participants described progress as ‘rocketing research’! 50 years ago, there were very few treatments available, but research has led to improvements in care, and there are even more treatments on the horizon. We now want to build on this discussion to make more people aware of the developments in Alport syndrome research.
At the end of the day, we all thought of a single word to describe our impressions, and these were all very positive and included: amazing, inspiring, informative!
For information about future information days, please visit: http://www.alportuk.org
Dr Rachel Lennon
Consultant Paediatric Nephrologist
Royal Manchester Children’s Hospital
