From CEO Laura Szutowicz, HAE UK:
Over the summer, the UK has seen some changes as the COVID-19 vaccine rollout gathered pace and the weather improved. Children have gone back to school after the holidays, and many members are taking up the reins of life before the pandemic.
HAE UK is also seeing some changes in our Trustee Board this autumn:
Ed Price, who took over as Chair of Trustees when his father, John Price, stepped down in 2017, has himself now resigned. Ed is a very senior civil servant in the UK and has steered HAE UK to grow and improve our service to patients and families affected by HAE. Ed spearheaded the development of exciting initiatives such as the Expert Nurse Training Course, improvement of the website and general comms, expansion of the Medical Advisory Panel, the Young Advocates (including the wonderful Percy the Pufferfish), the merchandise shop, and several exciting Patient Days including the last one in 2020. Owing to COVID-19, this had to be virtual but is an amazing resource available on our website. Ed is a talented violinist and plays in a London orchestra, and we do hope he will occasionally come to Patient Days and catch up with us all.
We are delighted that Ann Harding, despite her demanding career as Road Services Director of Quattro Plant Ltd, is to step up as Chairman of Trustees. Ann has been involved with HAE UK since the start in 2010 when Ann Price initiated the organization. Until that time, she had spent much of her time repeatedly fighting in a battle for diagnosis and treatment for her child, Sian, now 30. This is a resume of what made Ann so driven to work for HAE UK. Sian says:
“My mum noticed that 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. It felt like someone was stabbing me in the stomach; like somebody was grabbing and twisting my insides. It was unpredictable and would happen anywhere; foot, arm, four times the size. 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.”
“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. 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 recognize 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 explain the history to an A&E doctor or nurse repeatedly. But even so, she’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 was fantastic. The doctors and nurses were amazing, but sometimes 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 a single mum juggling a job to pay the bills. I did have a tough time. Sian has a sister, Keighly, four years older, who doesn’t have HAE. Keighly was a ballroom and Latin dancer; she was amazing and came second in the UK. But I was managing 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 was finding life even harder as she went through adolescence:
“It came to a point where my veins collapsed from being used too often when I was 12 or 13, so they put 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 in hospital to have another Hickman line operation, then a third one got really badly infected, and I was in the hospital for three 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 an adult hospital.”
After the Hickman Line was removed, the veins had a chance to recover, so Ann pushed for Sian to become the first person in the UK to be trained to self-medicate. Sian explains:
“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.”
HAE UK is very fortunate to have such an energetic and driven Chair of Trustees. Ann’s final comments:
“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.”
The last word must go to Ann’s boss, 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.”
HAE UK is sorry to say goodbye to two Trustees who have generously given their time over the past years: Sam Oxley, herself with HAE and mother of our karate black belt trainer Youth Ambassador, Alex. Sam has many family commitments, and we are sorry to see her go but thank her very much for all her help and support over the years. Thank you also to Tom Pickering, who came in as a Trustee in order to provide us with legal advice as he was a solicitor specializing in charity work. He has married, had a baby, and changed jobs since then. He is very busy but has been of great help to us since he came on the Board.
We are very excited to welcome June Cole onto the Board of Trustees. Many of you will be aware of June, who is a keen singer and, as part of the Rock Choir, has been involved in a chart-topping record. She also organized a flash mob with the Rock Choir in a busy shopping centre to raise funds and awareness for HAE UK. June is a passionate educator and advocate and is our key person for presenting about HAE in Emergency units.