Debbie Knights
Debbie & Ross's page
Fundraising for HAEUK
Story
A few years ago I had some health issues and was supported by many people, one of which was my school friend Donna. I said to Donna at the time that whilst I've enjoyed running for many years, it's really just been for health benefits but if I ever entered an organised event that would challenge me, I would use this to try to raise some awareness and donations to a cause close to Donna's heart....so Colchester Half Marathon it is! 😳
For most of her life Donna has suffered with a condition called Hereditary Angioedema, although I was aware of this, I had no real idea of how dibilitating it was for her.
Thank you so much for your support and any donations you are able to make 🙏💖😘
Donna explains in more detail below.
Hi,
My name is Donna Dix.
I have and suffer from a rare condition called Hereditary Angioedema (HAE)
A life threatening condition which causes swellings, internal and external on various parts of the body.
A little bit about HAE and my background.
At the age of 13 my HAE appeared out of nowhere. I was at school when my hand swelled up (as if you were blowing up a rubber glove) huge!
It was painful and I couldn't hold a pen. The school asked if I hand knocked it or had been stung. The answer was No.
They rang my Dad to come and fetch me. He took one look at my hand and said " That's what used to happen to your Mum" ( My Mum died when I was 4)
From there on in I would have peripheral and internal swellings for many years (25 plus) without any treatment or pain relief.
The condition is very rare and only 1 in every 10.000 in the UK, 1 in 50,000 world wide have it so understanding and knowledge was limited.
There were no specialist doctors or nurses at that time who could help.
All I knew at that time was that my maternal Grandfather had it (who had passed away) and my Mum. She was the only one out of her 3 siblings who inherited it.
In my early years this was a debilitating condition and I was admitted to hospital on a regular basis to be poked, prodded and used as a guinea pig. I was given IV fluids because of the dehydration from constantly being sick.
There is a 50/50 chance of inheriting the condition. I have 2 daughters and have unfortunately passed it on to my eldest.
Out of my 3 siblings, 2 of my sisters (twins) also have HAE but their children are free from it, thank god.
In 2013 my sister was doing some research on the Internet and came across some information about HAE, We have never looked back since that day. It gave us so much information that filled in alot of blanks that we never knew. We travelled to London to see Dr Hilary Longhurst (Immunologist) who changed our lives. Now with knowledge and understanding of what our condition is we can now manage and self medicate the condition at home. We have been taught to intravenously self medicate with a C1 inhibitor which will stop the swelling at the first sign.
There is no cure for HAE at present but there is ongoing research into gene therapy.
If you would like to know more about HEA you can visit the website.
There are some graphic pictures on there of what swellings look like when they appear on our bodies.
Thank you for taking the time to read my story and I hope you can help.
Donna.x
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