Weʼre raising £10,000 to help pay for life changing medication
- Royal Borough of Kingston upon Thames, UK
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Hey everyone. Just a quick insight as to why I have started this page. In March 2016, I was taken into hospital for spiking high fevers and dizziness. I remained hospitalised for 2 weeks and the diagnosis was an infection in my kidney. After I came out I realised that I was getting lots of pain and inflammation in my major joints. I was becoming incapable of completing everyday tasks and had to take a lot of time off work.
In April, I was finally diagnosed with inflammatory arthritis. I began taking a lot of medicines to help and they did not seem to be working. I then went on steroids and a tablet called sulphasalazine and increase the dosage every month. On the second month of increasing this, I realised that I was getting all of the symptoms I was getting in March; fever and dizziness. This time it came with constant vomiting. When the vomiting started, I knew something wasn't right so went to hospital. Within 5 minutes of arriving, I was told my temperature was very high and my heart was beating incredibly fast. I was taken straight into resuscitation and remained there. After going through what seemed like hell, I was taken to a ward where I was told I could have meningitis on the brain! They carried out many biopsies including a liver and bone barrow biopsy which had to be the worst thing I've ever had to do in my 22 years of living.
The results came back and thankfully it was inclusive. I was still continuing to deteriorate, my liver was shutting down by the second and the doctors couldn't figure out why. Many doctors from all over the country were trying come up with answers but they just couldn't. I was then moved to intensive care and remained there. After a month of research, they FINALLY came up with a diagnosis. ADULT ONSET STILLS DISEASE. A rare systemic auto inflammatory disease where your body just wants to shut down on its self for no reason.
I thought I would die so I began saying my goodbyes when a doctor walked in holding an injection. He told me that this would help with my diagnosis if I take it daily alongside other medication. HOWEVER, they had to apply for funding to get it and they couldn't guarantee how long they would get funding. This drug, called Anakinra, was far too expensive but it was the only thing stopping me from deteriorating.
They managed to get funding for 6 months and have applied again for another 6 months. There is never a guarantee that I will get them so every month I'm playing it by ear.
They type of money I have does not even get me one injection let alone a months worth. Along with my savings, I hope that people read this story and wish to help me towards my goal. I fear for what will happen to me once they stop the funding.
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Louise Jones started crowdfunding