Help Taylor-Mae fund life-saving cortisol pump
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Help Taylor-Mae fund life-saving cortisol pump
Hello, my name is Taylor-Mae Atkinson, I am 23 years old and this is my story. I have battled with a multitude of chronic illnesses since 2005, but I have refused to allow any of them to dictate my future, or ability to appreciate every aspect of life. I currently live with tubulointerstitial nephritis, uveitis, glaucoma, cataracts, scleritis, Cushing’s disease and adrenal failure, all of which require a daily concoction of over 30 medications. Despite all of my conditions developing as a result of lengthy NHS waiting times, years of continuous misdiagnoses and incorrect treatment, I still do not qualify for NHS prescriptions and insurance in the UK won’t cover me due to the complexity of my case.
The Backstory
My first introduction to the hospital world came aged 8 when I was rushed to Great Ormond Street with kidney failure. The days merged into years, but even after operations, vigorous steroid treatment and with drips attached to every part of me, the nurses were amazed that I still had enough resilience to attend the hospital school (I had goals to work on). A couple of years passed, when the same auto-immune disease which had caused my kidney failure spread to the back of my eyes. I could not have anticipated what followed, as I gradually began to have black-outs and lose my sight. I can remember the exact moment that my entire world crumbled when leading consultants at Moorfields Eye Hospital told me that failure to treat my uveitis at my local hospital, had resulted in me being hours away from going blind. I was immediately rushed to theatre, where I underwent surgery that took 7 hours on each eye. It was here that Professor Khaw used donated eyes to construct Baerveldt implants in order to preserve my remaining sight. I spent a while adjusting to life on high-dose steroids and anti-organ rejection medication, but I was so grateful to my organ donors, a gift impossible to ever repay.
The ordeal was far from over as I continued to fight the auto-immune disease that raged on, I hoped that my body would stop attacking itself and start to heal but this didn’t happen. With the seemingly impossible task of reducing the inflammation, the last 15 years have consisted of trials on countless combinations of immunosuppressants and chemotherapy, from methotrexate to cyclosporine, adalimumab, and most recently rituximab. After years of trial and error, horrific side-effects and misdiagnoses I battled on, determined that nobody else should have to endure this same fight due to NHS negligence. It wasn’t until January 2019, whilst studying for my final year of university that my life came to a screeching halt. My body was exhausted from the chemo and steroids and I became tired of doctors prescribing hope, rather than solutions to my chronic-illnesses. Within a matter of weeks of returning home from university I was hospitalised and diagnosed with both Cushing’s disease and adrenal failure, both fatal if left untreated. I didn’t quite understand the severity of both of these conditions, until my veins collapsed, and surgeons were forced to insert a central venous catheter into my jugular vein as a last resort to try and stabilise me. Without my adrenal glands producing cortisol it became impossible to live life as normal, it is the hormone responsible for virtually every function of the body, including the regulation of body temperature, blood sugar, blood pressure and metabolism, as well as impairing my ability to respond to any form of stress and causing severe immunosuppression. Things looked bleak, and at times my family thought I wouldn’t pull through. The reality of this was crushing and despite emergency referrals via the NHS I have seen only 2 doctors in 8 months, due to the length of NHS waiting times. It has reached the point in my life at 23 where palliative care has now been suggested as our next route to manage my debilitating symptoms and that honestly petrifies me.
How you can Help
So, here’s how you could help, the treatment I so desperately need in order to improve my quality of life isn’t available on the NHS despite Cushing’s and adrenal failure being life threatening. This has resulted in me becoming steroid-dependent and requiring medication for the rest of my life. As a student and having to give up work as a barista due to my health means funds remain tight, and hospital bills continue to mount. My family have been incredible this far, helping to fund my most recent surgery and restoring normality as much as possible in such testing times. Pioneering treatment is available that has the potential to entirely transform my life, but this comes with a huge price tag. I hope that this campaign raises awareness about the severity of Cushing’s disease and adrenal insufficiency and is able to help me self-fund treatment that otherwise isn’t available on the NHS.
The Costs
Hydrocortisone day curve test = £1,994
Blood work = £396
Follow-up appointment with consultant = £200
Cortisol pump treatment (1-month trial) = £550
Cortisol pump device = £5,000
1-month prescription = £150
Cutting-edge technology in the form of a cortisol pump available only privately would mimic the role of my failed adrenals, providing a constant stream of cortisol into my body through a device fitted under my skin. This pump would reduce the likelihood of me slipping into an adrenal crisis undetected, whilst lessening side effects and overall improving my quality of life. This new treatment would hopefully enable me to have enough strength to graduate and pursue dreams of studying for an MA in investigative journalism. Going forward it is my mission to advocate for others who like myself would have their lives so drastically improved with the cortisol pump, but research is scarce and underfunded due to the rarity of these conditions.
I do not intend for the end of my story to be a sad one, the prospect alone of having such treatment gives me the hope and determination to continue to fight this battle. I hope to go on to tackle the injustice I have experienced at the hands of the NHS by advocating and speaking up on behalf of others who continue to suffer, as well as for those who could no longer live to continue the fight. If you managed to keep reading until here, thank you. That in itself is so important to me. Any donation, regardless of how small will help towards this pioneering treatment.
Be sure to spread the word and stay tuned for updates along my journey!
Hello, my name is Taylor-Mae Atkinson, I am 23 years old and this is my story. I have battled with a multitude of chronic illnesses since 2005, but I have refused to allow any of them to dictate my future, or ability to appreciate every aspect of life. I currently live with tubulointerstitial nephritis, uveitis, glaucoma, cataracts, scleritis, Cushing’s disease and adrenal failure, all of which require a daily concoction of over 30 medications. Despite all of my conditions developing as a result of lengthy NHS waiting times, years of continuous misdiagnoses and incorrect treatment, I still do not qualify for NHS prescriptions and insurance in the UK won’t cover me due to the complexity of my case.
The Backstory
My first introduction to the hospital world came aged 8 when I was rushed to Great Ormond Street with kidney failure. The days merged into years, but even after operations, vigorous steroid treatment and with drips attached to every part of me, the nurses were amazed that I still had enough resilience to attend the hospital school (I had goals to work on). A couple of years passed, when the same auto-immune disease which had caused my kidney failure spread to the back of my eyes. I could not have anticipated what followed, as I gradually began to have black-outs and lose my sight. I can remember the exact moment that my entire world crumbled when leading consultants at Moorfields Eye Hospital told me that failure to treat my uveitis at my local hospital, had resulted in me being hours away from going blind. I was immediately rushed to theatre, where I underwent surgery that took 7 hours on each eye. It was here that Professor Khaw used donated eyes to construct Baerveldt implants in order to preserve my remaining sight. I spent a while adjusting to life on high-dose steroids and anti-organ rejection medication, but I was so grateful to my organ donors, a gift impossible to ever repay.
The ordeal was far from over as I continued to fight the auto-immune disease that raged on, I hoped that my body would stop attacking itself and start to heal but this didn’t happen. With the seemingly impossible task of reducing the inflammation, the last 15 years have consisted of trials on countless combinations of immunosuppressants and chemotherapy, from methotrexate to cyclosporine, adalimumab, and most recently rituximab. After years of trial and error, horrific side-effects and misdiagnoses I battled on, determined that nobody else should have to endure this same fight due to NHS negligence. It wasn’t until January 2019, whilst studying for my final year of university that my life came to a screeching halt. My body was exhausted from the chemo and steroids and I became tired of doctors prescribing hope, rather than solutions to my chronic-illnesses. Within a matter of weeks of returning home from university I was hospitalised and diagnosed with both Cushing’s disease and adrenal failure, both fatal if left untreated. I didn’t quite understand the severity of both of these conditions, until my veins collapsed, and surgeons were forced to insert a central venous catheter into my jugular vein as a last resort to try and stabilise me. Without my adrenal glands producing cortisol it became impossible to live life as normal, it is the hormone responsible for virtually every function of the body, including the regulation of body temperature, blood sugar, blood pressure and metabolism, as well as impairing my ability to respond to any form of stress and causing severe immunosuppression. Things looked bleak, and at times my family thought I wouldn’t pull through. The reality of this was crushing and despite emergency referrals via the NHS I have seen only 2 doctors in 8 months, due to the length of NHS waiting times. It has reached the point in my life at 23 where palliative care has now been suggested as our next route to manage my debilitating symptoms and that honestly petrifies me.
How you can Help
So, here’s how you could help, the treatment I so desperately need in order to improve my quality of life isn’t available on the NHS despite Cushing’s and adrenal failure being life threatening. This has resulted in me becoming steroid-dependent and requiring medication for the rest of my life. As a student and having to give up work as a barista due to my health means funds remain tight, and hospital bills continue to mount. My family have been incredible this far, helping to fund my most recent surgery and restoring normality as much as possible in such testing times. Pioneering treatment is available that has the potential to entirely transform my life, but this comes with a huge price tag. I hope that this campaign raises awareness about the severity of Cushing’s disease and adrenal insufficiency and is able to help me self-fund treatment that otherwise isn’t available on the NHS.
The Costs
Hydrocortisone day curve test = £1,994
Blood work = £396
Follow-up appointment with consultant = £200
Cortisol pump treatment (1-month trial) = £550
Cortisol pump device = £5,000
1-month prescription = £150
Cutting-edge technology in the form of a cortisol pump available only privately would mimic the role of my failed adrenals, providing a constant stream of cortisol into my body through a device fitted under my skin. This pump would reduce the likelihood of me slipping into an adrenal crisis undetected, whilst lessening side effects and overall improving my quality of life. This new treatment would hopefully enable me to have enough strength to graduate and pursue dreams of studying for an MA in investigative journalism. Going forward it is my mission to advocate for others who like myself would have their lives so drastically improved with the cortisol pump, but research is scarce and underfunded due to the rarity of these conditions.
I do not intend for the end of my story to be a sad one, the prospect alone of having such treatment gives me the hope and determination to continue to fight this battle. I hope to go on to tackle the injustice I have experienced at the hands of the NHS by advocating and speaking up on behalf of others who continue to suffer, as well as for those who could no longer live to continue the fight. If you managed to keep reading until here, thank you. That in itself is so important to me. Any donation, regardless of how small will help towards this pioneering treatment.
Be sure to spread the word and stay tuned for updates along my journey!
Organizer
Taylor-Mae Atkinson
Organizer
