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…

Thank you for taking the time to visit my JustGiving page today and reading my story so far. My family, friends and I aim is to help 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