Emma Harrison (UK): from a mosquito bite to learning to walk again
In 2014, aged 25, British artist Emma Harrison embarked on an adventure to Myanmar with the project of setting up an exciting furniture business. When she felt a little unwell during her stay, Emma visited a local doctor. Immediately, this doctor recognised a possible infection with dengue fever - in the absence of a cure for dengue fever, case management was initiated. But what happened next changed the course of Emma's life: who could imagine that what started off feeling like a bad cold would eventually lead Emma having to learn to walk again. In this patient testimonial, Emma narrates her struggle and journey to overcome the consequences of dengue hemorragic fever, and some important lessons for healthcare providers in non-endemic countries.
I am a seasoned traveler, my first experience of an international doctor was one who saved my life. Before I even sat down, within less than a minute of meeting the doctor, he said to me, "I will examine you and take a history and run some tests, but it looks to me like you have dengue fever". That, I know now was a very experienced front line doctor in Myanmar.
At the time I thought dengue fever was like a bad cold. I knew a few people who had had it. I had no idea it could develop into a hemorrhagic fever, but this doctor had already noticed the warning signs, bleeding gums and rashes.
I sat through a pretty surreal appointment, where blood transfusions and medical evacuations were discussed. For someone thinking they just feel a bit under the weather this seemed extreme. This was the doctor warning me how fast dengue can develop and how serious it can become. Following my brief consultation, blood was taken and fluids given along with several ice packs - a fever in a tropical climate is far from ideal. By the time the saline drip had finished they had my blood results, confirming I had dengue fever.
This clinic was not a place to be admitted so I returned home in the comfort of knowing the clinic was 10 mins from home and open 24 hours, and the doctor had reassured me that if necessary they could get medical evacuation to a hospital in Thailand.
Discussions of traveling to Thailand for blood transfusion was the main thing I had taken from my consultation. I was told that this was because blood is not properly screened in Myanmar. The decision was made with my family over the phone that, while I was still well enough, I would travel home to the United Kingdom, via Thailand and Qatar. I have no recollection of most of this journey at all. I do remember telling someone when I arrived in the United Kingdom at Heathrow Airport that my parents were meeting me to take me straight to the Hospital for Tropical Diseases, based at the University College London Hospital (UCLH). This was at the suggestion of the British Embassy in Myanmar. My parents had also drawn up the same plan after calling our family doctor as well as the Hospital for Tropical Diseases (HTD) in the UK.
I was treated as soon as I reached the HTD's triage by some very attentive junior doctors and registrars, I must have seen them at least every hour according to my mum who sat by my bedside. I felt comfort being in a clean hospital with nurses who were professional and caring, not giggling whilst treating me, as they had done in Myanmar. Being home on British soil and in a specialist tropical disease hospital, I assumed I’d get some of the best care in the world.
However, whilst the doctors were very professional, it became apparent when I was finally able to talk with them, that actually their experience with dengue fever was very limited, and especially for serious cases like the one I had. This is understandable given that dengue doesn’t exist in the UK; however this was after all the specialist tropical disease hospital. Furthermore, the necessary blood test would take two weeks to confirm I had dengue fever, as it would not be done at UCLH, but at another site elsewhere in the UK. Over the next few weeks, I was treated as an outpatient, as I had been told that there would be no way they would perform a blood transfusion for dengue in the UK, and treatment would be limited to paracetamol and fluids which could be administered at home.
It's during this time that some significant neurological complications developed: the sensation and strength in my entire body except a small portion of my face ceased. I woke up one day knowing that something was really wrong.
On our next trip to the hospital I was told this was entirely normal and would subside in the next few days. I trusted the doctors and I was given this advice continuously for a couple of weeks. The fever eventually disappeared, I started to feel better in myself and my blood test results also showed that I was starting to recover from the infection caused by the dengue fever virus. But the neurological symptoms never improved.
In hindsight, I should have fought to be monitored more closely in hospital. Over the next few months, I saw several different doctors at different hospitals, all of whom offered very little in terms of diagnosis. After some time I was referred to a neurologist. Throughout all of this, I was feeling increasingly weak and loosing strength, even although I had fully recovered from the dengue fever.
After a few months of visiting several doctors in the UK, the decision was made to return to Myanmar. I had left in a hurry without my belongings so needed to return at some point. During this trip I went to a private hospital in Myanmar, incredibly the waiting room had the highest concentration of mosquitoes I’d ever seen in my two years in Myanmar. I was on edge immediately, knowing the risk if I contracted dengue again. I was in luck: the doctor I saw ran several tests almost immediately and explained to me that I had developed "transverse myelitis", a swelling within the spinal cord. He spoke with a paedriatric colleague who explained that this was seen very frequently in children who contracted dengue fever - recovery, however, wasn’t really possible and, terribly, it seemed highly likely that the condition I was in at that time would not improve.
When I returned to England, a letter had arrived confirming that this was the probable cause of my extreme weakness and I was finally referred to a neurological centre for physiotherapy and occupational therapy. Once this started I could tell it was going to help, so I started working with several people (mainly sports specialist) who could help me implement the physiotherapy as a much needed assistance. I could see improvement but it was very slow and I didn’t feel I had enough support - this caused a huge amount of anguish for me. I was being told to settle for adaptations rather than strive for recovery. I was doing a huge amount of private research and asking every specialist I met if I could be doing anything else to help or for referrals anywhere in the world, but this was just a series of doors being closed in my face.
After a year of struggle I decided to visit a neurological rehabilitation centre in the USA, and this was the first time someone told me that a full recovery could be possible with hard work and dedication. Since late 2016, I have been working under the guidance of this centre in the USA and also with a functional medicine doctor in the UK to help with my recovery, as well as practicing specific exercises to challenge my neurological system daily. This has been challenging and taken a huge amount of time and expense but finally things are starting to progress and my neurology is improving; most importantly my walking is improving.
Emma Harrison
https://www.justgiving.com/fundraising/emma-harrison56
