Patient stories submitted to the Lauren Currie Twilight Foundation to support awareness and education of Vasculitis.
Patient stories submitted to the Lauren Currie Twilight Foundation to support awareness and education of Vasculitis.
If you are newly diagnosed with Vasculitis, researching the internet for information and fearful on what the future holds with Vasculitis then read on. They say a picture speaks a thousand words and this particular picture was sent to us by a recently diagnosed patient, Lorne Brown, who had been diagnosed with Granulomatosis with Polyangiitis (formerly known as Wegener’s Granulomatosis) and got to know LCTF when he contacted us initially for support and guidance. At 81 years of age, Lorne had poor function in his kidneys as well as lung presentation making him breathless due to the disease. Investigations and tests diagnosed vasculitis and the form Granulomatosis with Polyangiitis which can affect the smaller blood vessels particularly in the lungs and kidneys.
Lorne was a very active person prior to his diagnosis. He feared he would never do hill walking again which he loved. Lorne was diagnosed early with the disease and was placed on treatment involving cyclophosphamide and Azathioprine. Lorne’s kidneys have shown improved function and throughout he has kept himself active with short walks. You can watch Lorne’s interview at https://vimeo.com/85808487 .
On Saturday 30th May, Lorne climbed Beinn Ghlas, in the southern Scottish highlands. Beinn Ghlas stands 1103m and overlooks Loch Tay. On Saturday 14th June he will abseil 150ft from the iconic Titan crane in Clydebank to support Vasculitis through The Lauren Currie Twilight Foundation. These are incredible challenges and an amazing journey for an 82 year old with Vasculitis who is back to what he loves doing most. Well done Lorne!
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The Lauren Currie Twilight Foundation would like to thank Steve Bulley, senior engineer with Nissan, for nominating Lauren’s charity to Nissan Motor Manufacturing Company Council for charity support. Steve was diagnosed with Granulomatosis with Polyangiitis (Wegener’s) and has been using our website for support and guidance. The charity was recently contacted by the company council in Nissan and invited to receive a a donation of £1,000 to support our research and support services with Vasculitis at a presentation event at the Nissan manufacturing plant on Friday 7th February 2014.
The charity was honoured that Steve (pictured) received the cheque on our behalf and delivered a talk on vasculitis, Lauren’s journey and the work and achievements of the LCTF – Lauren’s charitable legacy to Vasculitis. Steve received the cheque from Paul Cox (pictured) on behalf of the Nissan Company Council. The Nissan Company Council are made up of eleven elected employee representatives and raise funds for several charities every year through a number of events and activities.
Thank you for your amazing support.
Read her amazing story in the Daily Record newspaper which was featured on Saturday 4th January 2014. It explains her journey and battles with Vasculitis when she was diagnosed after the birth of her first child and how it has not stopped Debbie overcoming amazing challenges. Debbie recently cycled 250 miles in 3 days (Ayrshire to Aberdeen) to help raise funds for our research at the University of Aberdeen.
Debbie is now taking on the 102 mile Three Piste Cycle challenge in Scotland later this year. Read her story here: http://www.dailyrecord.co.uk/news/health/single-mum-reveals-how-pedal-2986451
Andy Mackie and Alicon Ferguson recently delivered a patient talk at The Lauren Currie Twilight Foundation Edinburgh Vasculitis Support Group on 23rd November. Andy and Alicon are both patients at the Edinburgh Vasculitis clinic under the care of Dr Kluth and Dr Neeraj Dhaun and are keen to talk about their journey to help other patients.
Andy Mackie was diagnosed with Microscopic Polyangiitis and has given a talk on his journey with the disease. Andy talks about what to expect from MPA, symptoms, treatments and how the disease has not held him from pursuing other challenges in life. Alicon Ferguson was diagnosed with Granulomatosis with Polyangiitis (formerly Wegeners Granulomatosis) and Alicon talks about her 30 year journey with GPA and the difficulty of being diagnosed.
You can watch both presentations on our Vasculitis TV at the Patient Support Centre by selecting case study 4 & 5. If you are not already a member then you can register at http://www.thelaurencurrietwilightfoundation.org/component/users/?view=registration
“You have a star aura” Simon Cowell
The UK’s best loved impressionist took us all by storm in this Summers Britain’s Got Talent series by making it all the way to the final with her incredible talent and disarming sense of humour. Francine Lewis joins the 2013 Black & Red Ball and brings her amazing collection of impressions to support Vasculitis with the LCTF.
Since 2013 BGT she has gone on to be nominated by the UK public for The Most Popular Female Personality of the year and has attracted nearly 100,000 Twitter followers, illustrating how she became one of Britain’s comedy faces.
Francine did an amazing audition and live final performance with impressions of Katie Price, Cheryl Cole and Stacey Solomon along with a host more. Francine received a standing ovation from the audience and the judging panel when she first appeared on BGT.
With a smouldering talent fuelled by her passion to perform, Ember Rozelle is poised to ignite the music industry. Scotland’s newest and most prodigious singer/songwriter has infused her angelic voice with profound lyrics and a burning desire to deliver a world-class live music experience.
John Ramage was first diagnosed with Wegener’s Granulomatosis (new name Granulomatosis with Polyangiitis) over 12 years ago after it affected his lungs. John has raised a significant amount of money for other charitable causes and after reading Lauren’s story he decided to walk the West Highland Way for Lauren’s charity. In April he set out from Milngavie to walk the 154Km (96 miles) highland route to Fort William. The route starts at Milngavie and passes through Mugdock Country Park, follows the shores of Loch Lomond, passing Ben Lomond, through Glen Falloch and Strathfillan, crossing Rannoch Moor, past Buachaille Etive Mor to the head of Glencoe, climbing the Devil’s Staircase, descending to sea level to cross the River Leven at the head of Loch Leven before entering Lairigmorand Glen Nevis and finishes at Gordon Square in Fort William. This walk is intense for most so it is a positive and inspirational message that Vasculitis should not hold us back in our pursuits. John was diagnosed early and placed on treatment that has helped to control his Vasculitis and allowed him to pursue projects to raise funds for charity.
The Lauren Currie Twilight Foundation would like to thank Williamwood High School for sending us the S6 Yearbook. We want to thank the staff and the S6 year for their three page tribute to their friend Lauren who would have been finishing school tin June 2013. It was emotional to read the loving and heartfelt tributes being paid to her by staff and classmates, especially the quote “she was always smiling – even through her pain” which sums up for us what Lauren was like as a person. She was loved by everyone which is clear from the comments.
We want to thank all Lauren’s classmates and the staff at Williamwood for their support of her charity, the awareness of Vasculitis they created and the funds they have raised for the charity’s work. We also want to wish all of S6 the very best in their life after school.
Sam Leask was only 9 when he tragically died of Henoch-Schonlein Purpura (HSP Vasculitis) in October 2012 at Yorkhill Hospital in Glasgow. Sam’s parents want to improve playground facilities in Kirkton Village in Dumfries in memory of Sam. Grant & Adrienne (LCTF) met with Sam’s parents, Katherine & Julian and have offered to help and support the playground plans for Sam.
Sam’s parents said “following the tragic death of our dear son Sam we wanted to try and do something positive in our community. Improving the playground in Kirkton Village would provide our family with a permanent reminder of how Sam touched many lives. As an active boy he always loved visiting playgrounds and it would be fantastic to think that we have all improved the facilities for other children in the community.
This should provide a significant contribution to the lives of many children by giving them new play facilities in Kirkton Village Playground. The fundraising page set up by Sam’s parents for the memorial playground is www.localgiving.com/samleask – please help support Sam’s parents in making the playground a lasting memorial for their son.
MacKenzie wanted to put her heartfelt story on our website to highlight her experience and journey with Vasculitis in order to support awareness, encourage early diagnosis and encourage support for Vasculitis research. May is the International Vasculitis Awareness month and we are grateful to MacKenzie for sharing her story with us and for her support of Lauren’s Vasculitis charity.
You can read MacKenzie’s story on this website at the following page: http://www.thelaurencurrietwilightfoundation.org/patient-stories.html
It’s been 6 months since the vasculitis research programme began at the University of Aberdeen, following part funding by the Lauren Currie Twilight Foundation. It is from here that I will be giving you updates about this research and my experiences throughout. At the beginning of the study there was a press release briefly explaining the research, of which I’ve copied the link – http://www.abdn.ac.uk/news/details-13390.php.
I graduated from my undergraduate degree in Physiology, also from the University of Aberdeen, in June last year, returning soon after to begin my career in research as a PhD student. This opportunity is afforded to me, partly by the Lauren Currie Twilight Foundation and the fundraising efforts of all those involved. This means that for the next 3 years I will be dedicated to discovering new things about vasculitis, in an effort to improve understanding of the disease and consequently the lives of patients.
We will be focusing on ANCA-associated Vasculitis and patients with Wegener’s Granulomatosis, Microscopic Polyangiitis or Churg-Strauss Syndrome, who have met the study criteria, may have already agreed to be part of the study. Patients will give a blood sample and from this I will isolate immune cells, as well as ANCA antibodies.
The interactions these cells make with each other, and also other cell types, will be imaged live in 3D. Seeing how these cells interact can give clues as to how to tackle the disease.
As I’m sure the majority of those reading will personally know, the treatment for vasculitides, although very effective, can cause a multitude of serious long and short term side effects. It is our aim to discover novel treatments and possible biomarkers that can be used to minimise the exposure of vasculitis patients to toxic therapies. We want to identify characteristics that can tell treating physicians more about the disease activity in the patients. By doing so, it can be predicted when a patient has entered a period of remission and can therefore have their medication reduced. The same is true if a patient shows they may be vulnerable to relapse, then again medication can be increased to prevent another attack of the disease. Reducing the time a patient is on such medication would result in a reduction of side effects and an increased Quality of Life.
I hope that you will enjoy the updates about our research and any questions you have please let me know and I’ll be happy to answer them for you.