Self-Management - Alkaptonuria

Robert McIver shares his story of managing Alkaptonuria, a genetic condition that only affects 1-4 people per million, from a rural area in Scotland

www.geneticalliance.org.uk

Category:

Education

Tags:

• Self-Management
• Genetic Alliance UK
• Alkaptonuria
• AKU
• Rare Disease
• Rare Condition

[GeneticAllianceUK]

Thanks for telling me about your video. I certainly learned quite a lot more than I already did about how the condition affects you from watching it. It is one thing knowing about the genetics and biochemistry underlying the condition and quite another seeing how you have dealt with things. I am sure other people with the condition especially those who have recently been diagnosed will find it very helpful to see how somebody has come to terms with the limitations.

Tim D

[ochronosis]

Hi Robert,

Great informative video. Its also nice to be able to put a face to a name :-)

Simon

[findAKUre]

If you would like to know more about Alkaptonuria, please check our channel and website - just search for alkaptonuria society.