Patient Stories

Because HAE is such a rare condition many patients have never met another person with HAE. We all have our own individual journey as we seek to access the correct diagnosis and then to achieve good management of our condition.

Many patients feel that they have a good management programme that gives them good control over their symptoms. Sadly, there are still patients who struggle to access the type of treatment recommended in the 2013 NHS England Policy for the Management of Acute Attacks of Hereditary Angioedema and the 2014 UK Consensus Recommendation for the Management of Hereditary Angioedema.

Some of our HAE UK members have told their HAE story to share their own experiences in order to help and encourage others.

If you are experiencing difficulties in accessing treatment please do contact our HAE Patient Contact to talk about your situation.


Living with HAE

Read Ann’s story

Read Rachel’s story

Read Andy’s story

Read Rose’s story

Read Paul’s story

Read Chip’s story


Children living with HAE

Read Ruby’s story

Read Flo’s story

Read Luke’s story


Travelling with HAE

Read Rachel’s travel story