Tuesday, 13 October 2015

Patient Stories; The Raynaud's and Scleroderma Association; Nikki Whitehill

http://www.raynauds.org.uk/patient-stories/454-nikki Nikki has scleroderma, but she doesn't let it stop her In 1997, aged 24, I was diagnosed with the autoimmune disease diffuse systemic sclerosis and Raynaud’s phenomenon. At that time, I had graduated from Aston University with BSC (Hons) in Applied and Human Biology and I was working as a medical representative in Nottingham whilst studying for a postgraduate diploma in Law, with view to realising my childhood dream of being a barrister. I was advised, medically, that I had a 15 month prognosis as there was no cure and, more devastatingly to me, to give up on my dream. I was prescribed powerful disease modifying agents and left to hope for the best. Six months passed, and my disease was becoming more aggressive than ever, with my body feeling as though it was turning to stone with the stiffness and constant pain. I therefore decided to seek a second opinion from one of the World’s leading experts on the diagnosis, Professor Black in London. Within 30 seconds of being in her company, I knew that she wanted to help me get better and, of huge importance to me, she wanted to help me realise my dream. I was started on a very intense cytotoxic treatment plan, which subjected me to numerous IV chemotherapy drips in combination and followed up with high doses of immunosuppressants. My only other option was a stem cell therapy transplant, and I really did not like the idea of this. My IV infusions commenced a few days before Christmas 1998 and, Christmas for me that year, was spent in my bed at my parents house, feeling very, very sick. By the following Easter I had made a slight improvement with my symptoms but was unable to sit my Law exams, meaning that I had to drop back a year. I was wholly devastated about this, as this was another year added to the timescale of me achieving my dream job. Unfortunately, by now, my hands had become extremely painful and stiff, making it very difficult for me to hold a pen and further to my Consultant, who was now Prof Denton, very kindly, writing a medical letter in relation to the disability which I was experiencing due to my diagnosis, I was given my own room, a keyboard and extra time to sit my exams. Thankfully, I responded well to the medication and finally passed my postgraduate exams in the summer of 2000, handed in my notice as a medical rep, and started Bar School (the academic training required to be a barrister) in the September. I was elated that my dream was back on track, even though I had to spend every spare moment when I was not studying in my bed, having to rest and be respectful of my symptoms. In July 2001 I was called to The Bar at Gray’s Inn. However, I now needed to complete my vocational training by way of completing a ‘pupillage’- the ‘apprenticeship’ part of being a barrister, with places extremely limited and few and far between. I started working with an in-house barrister and finally started my pupillage in September 2003. Prior to the commencement of my pupillage, Professor Denton very kindly wrote a letter to my barrister mentor, explaining the nature of my diagnosis and how it would be best managed in the work place, concluding that my diagnosis should not prevent me from working, should the correct procedures be in place to assist me. On the 1st March 2004, I appeared at Nottingham Crown Court in my wig and gown as a self employed practising barrister. I was ecstatic that my dream had been realised along with my disease symptoms now being at a manageable level. It was then decided to decrease the daily dose of immunosuppressants, which I had been taking for the previous 5 years, with view to stopping the medication entirely. Unfortunately by the end of June 2004 I experienced quite a severe relapse in my symptoms, prompting me to have to stop working and relocate to my family hometown of Southport. At this time I was hugely disappointed that my body was not well enough to perform my 60 hour a week job as a barrister however, I felt so ill by way of having pushed myself for the initial first few years of the diagnosis, that it then took me six years to establish a daily routine to manage my symptoms, and begin to see a reversal of some of them. Throughout all of this time, Professor Denton has been of huge support and comfort with my progress, not only by my regular twice a year check ups, but also by the support given to allow me to manage my disease at a local level with the local medical professionals. This ‘shared care’ team approach has been crucial for the success that I see with the management of my disease to this day. My diagnosis is multi complex requiring me to have a team of medical professionals helping with my return to well being, with Professor Denton in London as the Conductor. I am also extremely grateful to my local Rheumatologist, Dr Sykes, for not only agreeing to assist with my shared care, but also for recognising in me, (which at that time I had totally forgotten about due to feeling so ill), some of the skills which I had acquired, and which could be used to help educate others about the disease. I was invited to give annual presentations to the new intake of doctors covering their rheumatology rotation, as well as sit as a test exam patient for the Liverpool Medical School’s Locas exams (Doctor qualification). I very much enjoyed this interaction, using my skills acquired as a professional advocate, and I was driven by the hope that an early diagnosis, due to the immediate recognition of the symptoms, would help a new patient. My General Practitioner, Dr Hughes, has also been crucial with the smooth running of my return to well being. The years of chemotherapy and immunosuppressants have left me susceptible to frequent, common infections which requires intervention from primary care as well as my local pharmacist. Since my diagnosis also affects my mouth by way of causing gum recession and tooth infection, I am also very grateful to my dentist, Mr Booth, and dental hygienist, Ms Doran, for their expertise in helping me manage these symptoms. The combination of this multi-disciplinary team approach has enabled me to feel well enough to become more active using my professional skills and qualifications, by way of being a regular volunteer with the charitable organisations for my diagnosis, as well as an expert patient with NHS England; the European Medicines Agency; European Rare Diseases Organisation, and more recently, one of the two patient representatives involved in the National Network of Quality in Primary Care. In relation to my dreams, I have a new dream now - to be able to say that I used to have the diagnosis of Systemic Sclerosis and Raynaud’s,. In the meantime, I hope to use the remainder of my life helping to illuminate and improve the patient journey, as well as be a pioneer for a cure and better understanding.