An HAE journey and journeys with HAE: Furkhanda’s story
A British HAE patient took the audience on a journey through her life and how she manages overseas trips with her condition and medication.
Furkhanda Haxton told her fellow patients and caregivers that she is 56 years old, divorced, and lives near Glasgow in Scotland.
Although she is currently unable to work due to several medical conditions, Furkhanda has held a variety of jobs within the UK National Health Service, call centers, and supermarkets, all of which she enjoyed. Currently, she is actively involved in voluntary roles with older people, as well as contributing her time and skills to her national HAE organization, HAE UK, which she has been a part of since its inception around 15 years ago.
Before her diagnosis, Furkhanda recalls a life much like everyone else’s. Stress, dental treatment, and puberty didn’t trigger an attack. But, shortly after starting university and meeting the man who would become her husband, she began on the combined contraceptive pill. Within a month, the day after seeing the dentist, she suffered a facial swelling, which horrified her. She ended up in hospital, but it was presumed the dental anaesthetic caused the swelling. It was the first of many trips to a hospital.
Thankfully, she said, a consultant familiar with HAE saw her. He considered her symptoms and the fact that her mother had had similar swells, along with blood test results, before telling her she had HAE. It was within 10 months of her initial symptoms, which she admits is very quick.
A concern was her family. Furkhanda knew her mother had swellings, but had never seen a doctor or been to a hospital, which she felt may have been due to being part of the Muslim community. At the time of her diagnosis, Furkhanda had lost contact with her family; her determination to help her loved ones saw her write to every family doctor in the area to ask them if her family were patients. Doing this led to a diagnosis for her mother and her youngest sister.
After her diagnosis, Furkhanda started the treatment available: high-dose anabolic steroids. There was little understanding of this treatment in the context of HAE, and she was unaware of the potential side effects. She gained weight, had increased body and facial hair, and suffered episodes of intense anger, which endangered her boyfriend during an argument. She stopped the anabolic steroids.
Ill health meant Furkhanda couldn’t continue at university. However, her care improved after she switched to an immunologist who was already treating other patients with HAE. Furkhanda felt this doctor listened to her opinion, and her care improved. Sadly, this changed when she married, moved, and started a new job in one week, but, remarkably, “I didn’t have any swellings at that time,” she said. Her new consultant in Cardiff seemed to be more concerned about the cost of HAE treatment than her care. Ever resourceful, Furkhanda crossed the border with England to see a different consultant and receive the HAE-specific treatment she needed.
Furkhanda mentioned her experience with the menopause, and that she has been able to tolerate oestrogen gel and patches without triggering an HAE attack.
Furkhanda was at the start of HAE UK, attending the very first meeting where setting up a charity was discussed. Now, she is an administrator of the HAE UK Facebook community. She actively looks out for patient questions, offering guidance and answering their queries.
Turning from her HAE journey to journeys with HAE, Furkhanda recounted her first foreign trip to the Philippines. She looks back at how challenging it would’ve been if she’d experienced a swell there, but at that point, her HAE was better controlled. She admits to ‘good fortune’ while on the trip.
Furkhanda and HAEi’s top travel tips
Furkhanda provided a series of top tips for all people with HAE when traveling abroad, which HAEi completely endorses. Her checklist is:
- Contact your doctors. Request a letter explaining HAE, the necessary medication, and how it is safe (and essential) that you carry it in a cabin bag.
- Pack your medication in a separate bag and clearly label each treatment with your name. If possible, ensure you have an extra supply of medicine as a precaution.
- Get travel insurance and ensure you declare all your medical conditions. People have shared horror stories about insurers denying claims or coverage because something wasn’t clear.
- When flying, ask to be allowed on the flight early. Boarding early ensures medication is more likely to be directly to hand, and not stowed elsewhere in the aircraft’s overhead lockers.
- Use the HAEi Companion App and HAEi Emergency Cards. Furkhanda uses these to explain HAE in local languages, and you can save the Emergency Cards on a phone for immediate access. The app also provides the locations of HAE centers worldwide.
- Be aware that a long journey can lead to tiredness, frustration, and irritability, all of which can trigger an HAE attack. Ensure that on-demand treatment is available whenever possible.
The audience offered a prolonged round of applause for Furkhanda’s honest and practical story.