Road Services Director Ann Harding Reaches Inevitable Destiny as Chairman of HAE Charity

HAE UK has announced that Ann Harding, Quattro’s Road Services Director, is to step up as Chairman of the Hereditary Angioedema Charity.  Many see this new appointment as inevitable destiny for a mother who has spent a lifetime fighting repeatedly in a battle for diagnosis and treatment for her child, Sian, now 30.

My mum noticed from birth I was always ill.  My stomach was swelling; I was vomiting and in excruciating pain; totally dehydrated.  She would rush me to A&E and it became the norm for me to be there twice a week. The doctors didn’t know what was wrong with me.  They thought it was appendicitis, maybe some form of cancer.  They kept pointing to blanks.  Then one day I was lying in the children’s ward on a drip and getting pumped full of steroids, and a Chinese doctor was on call.  He came to see me and said he had seen this same illness in another country he had worked in.  By fluke he just said, ‘Test her for this’, and they found out what was wrong.  It’s called HAE’ 

Hereditary Angioedema is huge swelling that can occur on any part of the body; hands and feet, arms and legs, stomach, genital organs, face, tongue, neck, and very dangerously, the throat.  It can involve vomiting and excruciating pain. It is hereditary, life threatening and very rare, affecting 1 in 50,000 people in the UK.

Ann

You have no idea what it’s like seeing your child so ill.  It breaks your heart; it just isn’t fair.  Sian was very sick and I felt in a helpless situation.  We were going A&E a lot, at any time… Christmas, birthdays.  She would be vomiting and swelling and they’d put it down to a stomach bug or allergy.  It’s so hard to diagnose.  At one point they thought it was appendicitis and when they took her down for the operation they found nothing wrong with her appendix.

Sian

It felt like someone was stabbing me in the stomach; like somebody is grabbing and twisting my insides.  It was unpredictable and would happen anywhere; foot, arm, four times the size.  It is plasma that is missing in your blood.  Most people can make it, people with HAE cannot. None of this was found out until I got diagnosed, then treatment came along, but that wasn’t easy, my mum fought for me every step of the way.

Ann

I knew something was wrong and I was not going to take no for an answer.  I was relieved when she was diagnosed but there was no help, and still a long way to go.  The first step was to get hospitals to recognise HAE, as many hadn’t heard of it.  Sian was given open access to a children’s ward which meant the nurses and doctors knew her and knew what was wrong with her and we could visit without having to repeatedly explain the history to an A&E doctor or nurse.

Sian

To treat me they used human plasma C1 esterase inhibitor, that’s the plasma that is missing in the blood that causes me to be so ill.  The blood renews every three days so they gave it to me intravenously, every three days.  My mum did anything to distract me.  I remember in the children’s ward there was a painting of an octopus on the wall with dots on it.  We would count the dots together as they inserted the needles.  I was very frightened at first, but in the end you want it in you.  Anything is better than being that ill.

Ann

Sian’s had a lot of operations.  I would wait until she was in surgery before I cried; I never wanted her to see me upset.  Great Ormond Street and Basildon Hospital were both fantastic.  The doctors and nurses were amazing.  The NHS is just… I would have been absolutely… I didn’t know whether she’d survive.  I didn’t think she would ever have a job.  I just tried to keep being positive about it and keep moving ahead.  My mum helped me.  If Sian was in hospital I’d stay with her, but I was juggling a job to pay the bills.  I did have a tough time. I said to my mum, ‘I feel like I’m in the middle of the room on my hands and knees and everyone is throwing bricks at me.’  I felt weak, helpless, tired, but I had to be strong; she’s my child, and the love for your children gives you strength.

Sian

My mum has always worked very hard.  She’s a businesswoman but she missed time off work for me.  My Nan looked after me as well.  My mum would stay up all night at hospital then next morning she’d go off to work, exhausted.  When I was fifteen or sixteen, her and dad split up, so she was on her own, bit-by-bit.  This illness is hereditary and comes from my dad’s side.  He has it and my gran had it badly. He doesn’t get it as bad.  He produces some of the plasma in the blood whereas I don’t produce any.  I think maybe he felt a bit guilty, saw that my mum was strong, and let her deal with it.

Download PDF

Ann

Sian has a sister, who is 4 years older, Keighly, and she doesn’t have HAE.  It’s 50/50 as to whether it is passed on.  Keighly was a ballroom and Latin dancer; she was amazing and came second in the UK.  She also stayed with Sian when she was in hospital. I was juggling family, work, house, travelling, bills and my children all the time.  I just kept facing battle after battle and I felt like I had nowhere to turn.  

Sian

It came to a point where my veins collapsed from being used too often when I was 12 or 13, so they put a Hickman line into my neck, a line that comes out the side you can feed drugs into. After a while the Hickman line got infected so I was back into hospital to have another Hickman line operation, then a 3rd one got really badly infected and I was in hospital for 3 months.  Eventually they took it out, but by this time I was 18.  There was a lot of back and forth because I was now an adult and had to go to adult hospital.  I had to go from Great Ormond street to adult hospital take it out in a cubicle.  I was screaming.  I was still a child.  Eventually they took me the theatre and took it out.

Ann

After the Hickman Line was removed, the veins had a chance to recover, so I pushed for Sian to become the first person in the UK to be trained to self medicate.

Sian

It changed my life.  I never thought I’d be able to do it myself, but now I inject myself every three days. Since I was 18 I have been doing it in my veins.  I mix a powder and liquid in a glass vile, and then put it into a syringe.  I put a butterfly needle into the vein over 20 minutes.  I have my one good vein that never lets me down.  I’ve done it in an airplane, I’ve done it in a car, you name it!  My medication is delivered to my home and they send me what I need, prescribed by the hospital.  The charity can help with this.

Ann

A woman named Ann Price started the charity www.haeuk.org.
Her family had HAE.  After she got diagnosed a doctor told her, ‘You might as well go home and write a will.’  Back then there was no help.  Only about eight families in the UK had, or were aware of HAE.  Now there are hundreds. With the help of my brother, Barrie, an environmental chemist, the Charity became registered in 2013.  Since then, getting diagnosed is a lot easier and we can help people financially if they need it.  Sian has helped with the charity and spoken to some children but doesn’t want to be involved with it on a day-to-day basis.  I respect that.  She has to live it.  As a mother I want to keep the research and knowledge side away from her; I can do the homework, she has enough to deal with.

HAE CHARITY STRATEGY

Over the years, Ann and charity colleagues have rooted plans that reflect real life experience.  Now the charity offers help and practice for HAE in many areas, a few examples include:

Building awareness of self-treatment

Ann

The problem are acutely aware of is people are not self-trained and not aware they can treat themselves and and use the injections. HAE UK’s number one goal is to encourage self-injection, which can aid an independent life.  This gets the illness under control; there is nothing worse than having to go to hospital every three days.

Sian

An attack can happen any time day or night, in the morning you can wake up with it, swollen anywhere.  Now I carry my injections everywhere I go.  If I feel it start to lump and go red.  I can nip it in it the bud. It’s better this way.

School plan

Ann

Schools used to make Sian do contact sport such as hockey, and I had battles with teachers to explain she couldn’t and shouldn’t.  Now we have plans in place for schools to understand the disorder better and avoid this situation.

Sian

It was awkward, painful and embarrassing having outbreaks at school.  I would swell and find it hard to walk around. I didn’t get as much time there as I wanted but I still did well.  My friends were very understanding.  I never did a full week at school because of HAE.  This would be different now, for children who need a school plan.

Translation of HAE into any language for trips abroad

Sian

I remember going on holiday to Spain and I wasn’t allowed to inject myself at the time.  I was very poorly out there.   Mum took me to the local hospital.  Felt like another world, nobody spoke English, my parent was not allowed in.  I went in on my own, trying to explain to them how to mix the medication, and they wouldn’t do it.  It was horrendous.  I was in a room with 3 old men trying to talk to me.  Somehow, in the end, my mum got a translator on the phone. ‘Give her the infusion, let us leave!’  She cried.  After that my mum said this is not happening again.  She got it all written up in Spanish.  This is something the charity will provide.  But back then they didn’t.

Talks in Hospital A&Es

Ann

The main fight I had on my hands on the journey with Sian was the hospital, they didn’t understand it, and didn’t want to inject her.  The Charity provides everyone with letters now.  I have done talks at different hospital A&Es to say if a child comes in here with swelling, it may not be an allergy.  Our plan is to roll this out across the UK bringing awareness to as many hospital A&E departments as we can.

Consulting with pharmaceutical companies

Ann

HAE works closely with Pharma companies that specialise in rare diseases.  They continue to develop and improve medication and keep the charity informed.

ON THE CHAIRMANSHIP

John Murphy, Quattro MD

Ann Harding has every possible quality needed to make this Chairmanship a success.  She is tenacious, passionate and driven; a warrior both as a mother and a Quattro employee.  Her vital yet unenvied and difficult thirty years experience combined with a dogged determination will lead her through any challenge. The Quattro Group congratulates her and I’m extremely proud to support her leadership of HAE in any way I can.  Never has a person been more right for a job.

Sian

My mum has always looked after me, and she has done an incredible job. I think it’s brilliant and right that she’s becoming the Chairman of the charity, even though I tell her she’s mad and crazy for doing it.  She’s a big character, a gob on legs!  With her, I have lived and breathed HAE.  It’s hard going through life having something like this, explaining to boyfriends, friends, people… it’s a bit like, wow!  But she has always brought me up to be independent and helped me to do better things.  Now I’m 30, running a company of 20 staff.  My mum is so driven, and she has driven me.  A lot of people with HAE don’t go to work.  If it wasn’t for her gob, I probably wouldn’t be as set up and under control. She fought for everything I needed. She kept on and kept on until she got action.  Without her, I wouldn’t be where I am now, with a job, my own house, a car, my partner Tommy, and now the potential to have children with a new revolutionary treatment that means HAE will not be passed on.  I am living breathing proof you can live a normal life with HAE, thanks to my mum.

Ann

I’m so proud of Sian, now the General Manager, and coping daily with this illness.  Nothing stops her.  I’m going to do the Chairman’s job because I’ve got to do it.  It’s not a question of whether I want to do it; I’m doing it because I need to.  I want to help people not have to suffer.  They need help to live a normal life.  I’m a fighter and I don’t take no for an answer. You tell me what’s more important than a sick kid.  

Ann and Sian Harding live 5 minutes apart, in Benfleet, Essex.  
Asked if there’s anything her mum couldn’t master, Sian replied,
She can’t cook!

FURTHER INFORMATION

HAE welcomes all support and donations for this rare illness.  If you’d like to consider fundraising, please get in touch
Email: support@haeuk.org  

Telephone: 07975 611787

For further information or to register as a patient visit

www.haeuk.org

Follow HAE on Twitter for latest updates at www.Twitter.com/hae_uk

Patients and families can join the private Facebook group