Amanda’s Angioedema Story

The story of Amanda

Hi, my name is Amanda and I live in England, UK. I’m 34 years old and 14 years ago, I first went into Anaphylaxis at work, with no explanation. For years I had been on antihistamines for unexplained rashes and minor swellings…. But nothing too dramatic!

Following my first Anaphylaxis, this unfortunately became an almost weekly event. I had to leave my job at the hospital as I was spending most of my time on Critical Care as a patient. I would have recurrent episodes of Anaphylaxis over 3-7 days, each of these attacks would require native amounts of medication and intervention.

Thankfully I had a wonderful Immunologist who decided to try and injection used in attacks of Hereditary Angioedema (HAE), despite me not fitting the diagnosis…. amazingly it helped!

I have had extensive testing, multiple immunologist and lots of medication trials but we still haven’t got to the bottom of why this is happening. However, thanks to the hard work and perseverance of my Doctors, I am far more ‘stable’ and am able to manage the majority of my attacks at home… This includes a whopping 30+ tablets though (that’s on a good day!)

Since all this started, I have also been diagnosed with Chronic Kidney Disease, Secondary Adrenal Insufficiency, Hypertension, Migraines, Diverticulosis and also an undiagnosed inflammatory liver issue. I also end up hospitalised quite frequently with Sepsis and Septicaemia, often a result of my abdominal swells.

Despite all of this, I manage to lead an enjoyable and fulfilling life… Even if it’s not the average kind. I work full time as an Admin Team Leader in the NHS and work alongside the most amazing team. I have 2 dogs, Tuffy and Rebel who keep me entertained and never short of cuddles… And I have the most wonderful family and group of friends.

I hope that one day, I will get a diagnosis…. The latest theory is that there is likely some underlying genetic issue, that is responsible for my various diagnoses.

I have always seen quality of life far more important than a diagnosis… But it would be nice!

Thankyou for reading my story… Keep being amazing!