From CEO Laura Szutowicz, HAE UK

I am Number 17 Campaign: HAE UK was one of 13 Rare Disease patient groups invited to propose a representative to be featured in the ‘I am Number 17’ campaign about Rare Diseases which is an initiative of Genetic Alliance and backed by Takeda. The basis of the title of the campaign is that one in seventeen people suffers from a rare disease in their lifetime, so they are actually not that rare!

The representatives designated as ‘Changemakers’ were paired with an artist who created artwork to symbolize the experience of living with a rare condition. Amongst other conditions featured were Haemophilia, Ehlers Danloss Syndrome, Tubercular Sclerosis, Sickle Cell and Ataxia. The campaign, the patient stories and the artworks can all be seen at https://iamnumber17.geneticalliance.org.uk.

Our Changemaker was Karen Owen. She was paired with artist Jazmin Parsons who created a portrait of Karen which was part of the ‘I am Number 17’ art exhibition which was at the Oxo Gallery in London.

Karen used the phrase ‘Live with not suffer from’ to sum up her experience of living with HAE and feels that Jazmin’s portrait sums up the many faces of her life with HAE.

Karen’s Story: I have lived with HAE all my life and was symptomatic with external swellings from about two years old. Though I was a “difficult” baby, so may have been having internal attacks from birth. Like many HAE patients and people living with other rare conditions, I spent my childhood in and out of GP surgeries and hospital clinics. Even though I was born with the condition, mine was due to a genetic mutation, not heredity, which is even rarer, so there were no family clues to help with diagnosis.

My earliest memory is being about age four and seeing a child in an allergy clinic look at me delightedly, saying very loudly to my Mum’s absolute horror “Look there’s someone else with a face like me!“

I was seen by many doctors and consultants, who all thought I had allergies. I remember coming home from one appointment and seeing my dad’s face when he was told by my Mum that he had to dig up all the primulas he had lovingly planted, “just in case”.

The hardest time for me was in my early teens. My parents had a troubled marriage, probably not helped by the stress of a child who was constantly ill, and they separated shortly after I started senior school and whilst I was dealing with entering puberty. So, my stomach aches and swellings increased in effect and frequency thanks to the combined effect of stress and hormones, which I now realize were all known triggers. All the symptoms still weren’t tied together, and at least one clinician implied I was ‘an attention-seeking neurotic female’!

I was finally diagnosed with Hereditary Angio-Neurotic Oedema when I was about 14 years old. Thankfully it’s no longer called that, as it created a certain amount of stigma, and I was often made to feel I was overreacting to period pains or being a hypochondriac. When I was diagnosed, I didn’t know anyone else with HAE, which was rather challenging. That’s why I’m so passionate about peer support! I didn’t meet another person living with HAE until I was 50 when I attended my first HAE UK patient conference. My ability to manage my health confidently changed exponentially with that support. I wonder how different my life would have been if I, and my family, had that support from birth? As a result, I changed my career and now work in the NHS as a HealthMakers Peer Support & Volunteer Coordinator, which is a program I started in East Berkshire back in 2014. HealthMakers are there to help anyone living with health issues to take more control of their condition & improve their quality of life.

My self-management regime is based on being mindful of the three possible scenarios we face every day – well days, hiccups/change days and emergency mode. I follow a healthy lifestyle; try to ensure I get enough sleep that I eat well and have a good work/life balance. This does mean I have to make sacrifices from time to time, and it’s important to pace myself by building downtime into my routines. I try not to let my condition stop me from being sociable with friends and family. However, I do see myself as lucky.

I was fortunate to grow up with a supportive family and friends. I have been able to work whilst living with HAE and hold down a job my whole life. I have many wonderful people in my life who I would never have met if I didn’t have HAE. I do, however, have to be realistic with what I can and can’t do. I have lost count of the number of events and holidays I’ve had to forgo or cancel at the last minute, and the £’s I’ve lost in deposits and tickets not used… but I still try to live my life to the full.

I also like to share what I can on social media and within the national and local health arena, raising general awareness of the number of people who contend with rare conditions on a daily basis. In addition to this, I also like to help the patients and their families and carers to have more understanding of the importance of gaining self-management skills and building appropriate peer support networks.

It’s vital to have hope when living with rare diseases such as HAE. Research is still being conducted, and new treatments are still being developed. Things have changed a great deal in my lifetime but knowing that people are devoting their lives to improving the lives of those living with the HAE and other rare conditions gives hope of improved quality of life & maybe a cure. I hope that the advocacy and volunteer work I carry out continues to make a difference.

I believe patient involvement in research and health and care service delivery is vital and key to improving the care we receive. That’s why I agreed to become a Changemaker, and I hope by being a part of the #IAmNumber17 campaign it can continue to raise awareness for HAE and all the rare conditions and ensure those who live with these conditions receive the peer support and self-management skills they need to live life to the full.

HAE and sports: Another member who does not let HAE get in the way of her life is our executive officer Rachel Annals. Many of you will know Rachel through her being the UK representative on the HAE International Board of Directors, and she is absolutely invaluable in the help she gives me in running HAE UK. Not content with having a full-time career in local Government and being the mother to Darcy, she has set herself challenges to complete this year. Her first was to take part in the New Year’s Day sea swim from Woolacombe, and in February she had a go at archery. Plans for the next months are flying a plane, dry slope skiing and running in a 5k or 10k. We will report on these in future magazines!

Patient Days 2020: Already being planned are our Patient Days. 2020 sees the 10th anniversary of the founding of HAE UK, started by John Rixon, Ann and John Price. Aided by HAE International, they set up the initial patient support and advocacy group, which grew and grew, becoming a registered charity in June 2013. We are planning to celebrate this birthday with an extra-special Patient Day on 21 November so make sure this date is in your diaries!

Fundraising for HAE: We are very fortunate in having people who wish to raise money to help HAE UK carry out our various projects, and we have some particularly interesting fundraising efforts coming up soon:

  • We have a runner for the 2020 London Marathon! Terry Mansfield, who is the manager of The Railway Hotel at West Hornden, has kindly suggested he donates all the sponsorship he receives to HAE UK. The Railway Hotel was where we ran the Family Fun Day last year and Terry and his team, aided and abetted by Trustee Ann Harding, made it a wonderful day for HAE UK. Now he is lacing up his running shoes and tackling the 26.2 miles of the big event. We hope that many HAE UK members will be able to support him and cheer him over the finish line. Sponsorship money can be donated through our Just Giving page at www.justgiving.com. Search HAEUK, and you will find Terry’s page or click www.justgiving.com/Terry-The-Railway-Hotel.
  • We are so lucky to have people like Terry raising money for us, but we are also especially fortunate to have people who want to remember HAE UK at very sad times in their lives. Our thanks and condolences to Trisha North who set up a page in memory of her mother Grace Fleischer. It was wonderful of Trisha to support HAE UK in this way at such a sad time for her and her family. Also remembered is Christopher Mead, who sadly passed away at the end of 2019. His family and friends kindly made donations to HAE UK. We are enormously grateful to them.

Contact to immunology centers: In the UK we are very fortunate to have more than 30 immunology centers treating patients with HAE. Each center is registered and approved and will have at least one clinician who is expert in treating HAE. Several of the centers are specifically for children too. So if you are traveling to UK contact either gro.kueah@zciwotuzs.arual or gro.kueah@slanna.lehcar to find the center nearest to where you are traveling.

With best wishes to all our friends in the HAE community.