I am Kelsey and 26 years old. I have been diagnosed with a rare type of Vasculitis - Takayasu Arteritis. I had covid-19 in 2022. My blood pressure was dangerously high, and I was struggling to breathe. My GP sent me to hospital, and from then on, I had lots of tests and scans. I was referred to Rheumatology at Hammersmith Hospital to be diagnosed in March 2023 with Takayasu Arteritis finally.

In April 2023, I unfortunately suffered a heart attack as a result of my occluded left coronary artery and issues with my mitral valve. I spent three weeks in different hospitals following my heart attack, with a view to have a double bypass. However, this was not possible at the time due to damage to my arteries caused by my condition. I then went on to have some Stroke-like episodes in June/July, and they were sadly misdiagnosed at a specialist Stroke Hospital as FND (Functional Neurological Disorder). It was assumed that the stress and trauma had triggered FND. I lost my ability to speak for several weeks and lost sensation in my right arm. Following a scan and review for Takayasu in September at Hammersmith Hospital, it was confirmed that I had suffered a stroke on the left side of my brain.

Looking back, I now realise I have been experiencing symptoms of Takayasu for a very long time. I have struggled to walk, felt very tired, short of breath and lacked energy, often having dizzy spells, and suffering with coughs and colds.

Since being diagnosed, it has been a roller coaster of emotions. I am now having to deal with so much change and understand what the future looks like - Lots of different medications and ongoing treatment. I am currently being treated with Cyclophosphamide infusions to hopefully put Tak into remission, with just one more session to go at the end of May. It’s certainly been a scary year for myself and my family. I have lost weight and struggle to eat. I have better days and not-so-great days, but my goal is to keep going and trying to get my life back.

Update: The rest of the year 2024 wasn’t much better for me as I continued to feel unwell. I was losing weight, had no appetite and was struggling to eat and drink and when I did I would suffer for hours after awful pain in my stomach, along with chest pain, back pain, kidney pain, and extreme tiredness I had no energy. I was in and out of hospital attending appointments and scans. My immune is weak and ended up with an infection that needed surgery and further treatment. At the end of December my blood results were showing problems with my Kidney function. I was admitted to hospital and treatment started for the infection. On further investigation it was discovered that I had a blood clot that may have travelled around the body and ended up dispersing into fragments in my Kidney’s! Treatment was started for the clot; My medication was review and changed.

For 2025 ongoing treatment, continued appointments, scans and a team of consultants and clinics including – Rheumatology, Nephrology, Cardiology, Neurology, Hypertension, Dermatology and Haemophilia.

Since starting the new medication, it seems to have helped with my appetite and the stomach pains have been a lot better. Hoping that 2025 will get better…

Kelsey continued to improve and even returned to work for a few weeks. She started enjoying life much more and getting out and about. In February Kelsey went for an operation to remove a lesion that was on her right groin and had been there for some time. It was decided that it would be best to remove it. Not long after having the lesion removed, back and forth to hospitals as there were further complications, with bleeding, infection. Kelsey also started to have stroke-like symptoms; She was omitted to hospital on a ward then moved into ICU, as she was struggling to breath. From her it spiralled very quickly; she was fighting sepsis and pneumonia. Because she was so immune suppressed, along with other complications (caused over time by her autoimmune disease Takayasu Arteritis – this has caused her arteries to thicken and tighten) making it much harder to fight the illness. She had fluid on the lungs and around her heart. Trying to fight the infection put a lot of pressure on her other organs. Her Kidney, stomach, bowel and liver function was already compromised. Medications, antibiotics, Dialysis, and Plasma Exchange therapy were tried to see if it could help, buy her the time to recover, and give antibiotics time to work. She was sedated and intubated to give her lungs the help they needed to fight the battle.

Sadly, Kelsey passed away at Hammersmith Hospital on Wednesday 12th March 25, she really tried hard right to the very end, but she couldn’t fight anymore…

You are amazing, your strength and courage, the fight you had for all that you have been through over the past two years and more. We will keep on fighting in Memory our of beautiful

Kelsey-Leigh. 💜

Love and missed by so many that knew her ‘Always and Forever’ our Angel 💜🌈✨️🦋

Thank you for taking the time to visit Kelsey's JustGiving page today and reading her story. As family and friends our aim is to keep on helping to raise funds, awareness for Vasculitis UK as sadly they do not get enough. If you can help in anyway, it will be greatly appreciated.

Thank you for your donation. xx