The story of Amanda

Hi, I’m Amanda and I live in NW England, UK.

14 years ago, I suffered a spontaneous episode of Anaphylaxis whilst in work. Since then, things have continued and progressed as the years have passed.

14 years in and still no diagnosis. It is thought that I have a rare underlying genetic disorder but as yet, we have been unable to diagnose this.

I have regular attacks of angioedema and anaphylaxis, I am treated as if I have allergies and Hereditary Angioedema but am not diagnosed with either.
I also have Chronic Kidney Disease stage 3, Adrenal Insufficiency and am prone to Septicemia and Sepsis. Alongside this, I have difficult to control hypertension and regular migraines.
Recently my liver has also been affected and a biopsy showed chronic inflammation, the cause of this inflammation is still unknown.

My health has had a massive impact on my life over the years, however I do believe that it’s made me who I am today. I appreciate the good days and I never take good friends for granted. I am proud of what I have managed to achieve, despite everything.

I have a loving family and group of friends. I also have the 2 most wonderful dogs at home, who give the best cuddles.

For 6 years, I was on long term sick and Disability, as I was spending a lot of time in hospital, on critical care.
I now work as an Admin Team Leader in the NHS and work alongside the most wonderful group of people. My work is like therapy to me.

I still have regular admissions to hospital and need to take time away from work due to infections and attacks of angioedema/anaphylaxis, however I am able to work through many of my symptoms, thanks to the supportive team surrounding me.
The exhaustion and pain experienced however, can be very difficult to manage.

I am thankful to have the most wonderful team of medical professionals supporting me throughout and I hope that one day, I will get that diagnosis.
Finding support groups, getting funding arranged for medications and getting the correct treatment in an emergency, is incredibly difficult without this.

Living with a rare disease is exhausting, worrying, debilitating and makes each day unpredictable. I never imagined I could be as strong as I’ve had to be over the last 14 years.

Rare disease connects us and together we are stronger!