Availability of some brands of Hydroxychloroquine
In recent months we have been receiving an increasing number of enquiries from people who are unable to get hold of some brands of hydroxychloroquine (most commonly Zentiva and Blackrock). Some people with lupus require a specific brand because they may experience bad side effects from other brands (usually Quinoric). The current issue has nothing to do with manufacturing or supply issues.
I have updated and improved the information we have on the LUPUS UK website, as well as producing a downloadable pdf for people to provide to their doctors/pharmacists. This is now available at https://www.lupusuk.org.uk/hydroxychloroquine-prescriptions/. This information will also be published in the summer edition of News & Views magazine. We would be very grateful for your assistance in disseminating this information to as many patients and healthcare providers as possible please.
Today we will also launch an online survey to help us better understand how many people may be affected by this problem. The survey will be open for the next two weeks at https://www.surveymonkey.co.uk/r/hydroxy. Again, we would be grateful for your help in sharing this link and encouraging as many people who take hydroxychloroquine as possible to complete it.
Deputy CEO Lupus UK
At Hinchingbrooke Hospital for World Lupus Day.
— John Richard Webb (@Mup123Webb) May 10, 2019
Help create a national register for people with rare rheumatic diseases
A key commitment of the UK’s Strategy for Rare Diseases is to create national registries. Better data will help us to find out how many people have each rare disease, how they are diagnosed, and how and where they are treated. This will give better information to people living with rare diseases, their doctors, and the commissioners of health services. It will mean that more people with rare diseases can be involved in research, and this will result in the development of new and better treatments. The aim of this research is to improve health for people with rare diseases.
I am working with the National Congenital Anomaly and Rare Disease Registration Service, which is part of Public Health England. They are starting to collect data on rare diseases. The work I am doing means that they can prioritise rare rheumatic diseases (such as Lupus, Vasculitis, Myositis, Sjögren’s syndrome, Scleroderma and Behҫet’s disease). We need to do research on the best ways to find and register people with rare diseases. Can you help us find a way to do this effectively and efficiently?
If you would like to give your views, and help shape or champion research on the best ways to do this please contact:
firstname.lastname@example.org, Dr Fiona Pearce, Clinical Lecturer, University of Nottingham
More information on the data collected by the NCARDRS, how it is used and your right to opt out of the register if you wish is available at www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs.
Read about some of the latest research into managing Raynaud’s published in the British Medical Journal: https://t.co/vVNZURO4WN @BMJ_Open #RaynaudsAwarenessMonth #KnowRaynauds #Health pic.twitter.com/Awe7qoyOzV
— SRUK (@WeAreSRUK) February 10, 2019
‘Imagine trying to arrange an appointment at a hospital two hours away by train with one specialist, whilst a different specialist sends you a reminder for an appointment a week later.’ Read a #raredisease guest blog on the need for coordinated care here: https://t.co/1P9Rl7K2e1
— Rare Disease UK (@rarediseaseuk) February 8, 2019
Jameisha Prescod, who is living with #lupus, has been featured on BBC News talking about her platform, @YouLookOkayToMe, which raises awareness and provides support to people living with chronic conditions. https://t.co/RLeEXMtcLM
— LUPUSUK (@LUPUSUK) February 8, 2019
A recent Phase 1 Trial shows that the antibody ‘BIIB059’ helps reduce inflammation & skin lesions in patients with systemic #lupus erythematosus. BIIB059 is a humanised antibody which is produced in another organism & engineered to be tolerated by humans. https://t.co/7Vcg2Ix8XD
— LUPUSUK (@LUPUSUK) February 8, 2019
“Best Health Possible”
A course presented and devised by our Committee member Dr. Sara Booth.
A Free taster evening Wednesday 27th February 2019 at
Fairycroft House, Saffron Walden.
For further information contact: email@example.com
“This is Lupus” makes Charity Film Awards shortlist
By Paul Howard
I received this email a short while ago informing us that our video #THISISLUPUS (https://www.youtube.com/watch?v=zFVQ2RJ3HaM) has made it onto the shortlist for the Charity Film Awards. This is thanks to the many people who helped to support us by voting for our entry in November/December 2018. I have completed the next steps and now we await the result from the judges to see whether we will be finalists.
Thank you to everyone who helped share the voting link.
Verity Clarke Charity 100 mile swim
Myself and some dedicated friends will be swimming 100 miles between January and April in 2019. 100 miles equates to 6,437 lengths of a 25-meter pool.
I previously organised a fundraiser for Lupus UK to help raise awareness. Lupus has had an enormous impact on my life as my grandmother, Patricia was diagnosed and later lost her life due to this disease. The time taken to diagnose played a large part as it was late and hindered much of the treatment.
Lupus is an autoimmune disease. The immune system mistakes the body’s own tissues as foreign bodies or invaders and attacks them. The general treatment of Lupus has to be tailored to an individual to control the symptoms and hope to slow the damage to organs.
This swim in honour of my Grandmother.
It’s not only to raise awareness but to hopefully generate a little money to go towards research.
£120,000 to 120 charities in 12 days!
Last year LUPUS UK was fortunate to be one of 130 charities chosen to receive a £1,000 donation as part of Ecclesiastical‘s 130th anniversary. Due to the success of last year’s festive campaign, the organisationare doing it all again this Christmas! Each weekday from 6th to 21st December 2018, 10 charities will win £1,000. That’s £120,000 to 120 charities in 12 days!
You can nominate LUPUS UK for the competition by going to https://ecclesiastical.eu.qualtrics.com/jfe/form/SV_3IC3eSnah4XcQo5. You will need to enter our Registered Charity Number which is 1051610.
The more nominations a charity receives, the greater the chance of them winning. So please make sure you tell your local groups, family, friends, work colleagues and anyone else you can think of to vote for LUPUS UK!
To help share the message I’ve created this webpage about the competition with a link to the nomination form – https://www.lupusuk.org.uk/ecclesiastical-competition/
Thank you for your help!
St. James House
Essex RM1 3NH
Tel. 01708 731251
Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey. Paper published by our committee member Sara Booth.
Congratulations to our committee member Sara Booth who has been successful in having her paper published by the world renowned Lupus Journal that is produced for specialists around the world and edited by Prof Graham Hughes. Please access the paper by this link Barriers to Maintaining employment or the pdf.
WOrld young Rheumatic Diseases Day (WORD day) 2019
ENCA (The European Network for Children with Arthritis) is planning the first WOrld young Rheumatic Diseases Day (WORD day) which will take place on 18th March 2019. This will be the first international awareness day for children and young adults living with rheumatic diseases.
Over the next few months ENCA will be creating more promotional material and a WOrld young Rheumatic Diseases Day awareness video which we will share with you through our website and social media channels.
We’d also like to invite any young adults living with lupus, or parents of a child living with lupus to share their experiences with us for this awareness event. If you would like to write an article or make a short video, please contact us for more details of how you can get involved.
Raising Awareness of Lupus with our MPs.
Please see our new page, October awareness month, with a pro forma for a letter to raise awareness of Lupus and the issues that matter to you with your local MP. October is Lupus awareness month and the right time to make our MPs aware!
Cambridge Building Society Community Award Night
Took place at the Felix Hotel in Cambridge. 15 charities took part in the final and received their award from the £12,000 kitty. The size of each
award was in proportion to the number of vouchers collected by the group. Our award was a wonderful £709. A massive thank you to Cambridge Building Society and the Cambridge Evening News and to Helen and Lara for representing CLG.
Donation from Waitrose & Partners
CLG was selected as one of the charities for the Trumpington Waitrose & Partners Community matters Scheme for July. There were 3 charities that were voted for by using the green discs given to customers at checkout.
One of the other charities was “Guide Dogs for the Blind,” so we had a great result in receiving £284.00.
A great big thank you to Waitrose & Partners for their donation to us and for running the scheme.
Please help Pembrokeshire Group
We have been contacted by Wendy from our new Pembrokeshire Lupus Group. Her email is below and please ask you friends to sign as well.
I run the relatively new Pembrokeshire Lupus Support Group and I was wondering if you would be willing to share my petition link with your members?
If you have any queries, please do not hesitate to ask me.
We need your Tokens!!!
Thank you to all who voted for us and we have succeeded in reaching the final round.
So between the 24th July to the 10th August we need to collect tokens from the Cambridge evening news, the more tokens we can collect the bigger the share of the £12,000 Cambridgeshire Lupus group will receive.
Please can everyone who has or knows someone that has the Cambridge evening news save them for us between the dates above so we can arrange collection or by sending them in a prepayed envelope.
We need our votes!!!
CLG has entered the Cambridge building Society Cash for the Community Competition for a slice of £12,000 donation available to local charities and help groups. To move into the next round we need as many votes as possible made via this link. https://www.surveymonkey.co.uk/r/cashforthecommunity18. Please share this link to your friends so that we may gain as many votes as possible. Closing date for this round is Wednesday 18th July 2018.
Very Sad News.
We share the very sad news that Shirley Smith passed away peacefully at The Arthur Rank hospice on Thursday 7th June, after a battle with cancer.
Shirley had been a committee member for many years and regularly came to the coffee and chats. She will be sadly missed.
The family would like to welcome you to the funeral on 27th June at 12.00, St Andrews Church, Swavesey, then the Cambridge crematorium followed by refreshments at The White horse pub, Swavesey.
Flowers or donations to CLG. Thank you
Please help us!
Most of you know that after several years as Chair, Shelagh has stood down from our committee. Although we are really lucky to have quite a few other committee members, we urgently need to re-think and re-group the committee. We didn’t have an AGM this year due to illness, work commitments and family issues so officially all the remaining committee members are serving in an interim role only and we really need to organise an AGM and get the committee back on track.
We need your help – many hands make light work and we would welcome additional committee members in any role. The workload isn’t huge – we mostly communicate by email and phone so it’s not a case of constant meetings etc.
A few of our supporters have indicated that they would be willing to help, so what we would like to do is have a very informal get together with anyone willing to become involved – whether it be in an ‘Officer’ role, helping with the newsletter, awareness raising, acting as a point of contact for the press and pharmaceutical companies, to give lupus presentations to local clubs and societies, to come up with fundraising ideas or simply to contribute ideas to lead the group forwards. Davina and Lara will organise it, they just need to know who is interested in supporting us, and what days/times would suit most people. We will even provide refreshments.
We are extremely proud of what we have achieved over the past few years – our group is one of the most successful and active in the country. We helped to secure the post of a specialist lupus nurse at Addenbrooke’s, our Information Days and AGM’s have always attracted the largest audiences, we have excellent relationships with the wonderful lupus teams at Addenbrooke’s, Hinchingbrooke and Peterborough hospitals, we are asked to attend events organised by pharmaceutical companies and the NHS and our ‘coffee & chat’ get-togethers are well attended.
So, where do we go from here? We need new ideas and enthusiasm – let’s make those blank stares from people when we say we have lupus a thing of the past. Without additional input our group is in serious danger of having to close.
Please get in touch!!
If you can help in any way please contact:
Davina – Tel: 01954 211679
Lara – Tel: 01954 210765
or email us at
‘Living with lupus’ videos for Lupus Awareness Month
For Lupus Awareness Month, Shaista and Colette, who both write regularly for our newsletter and have been wonderful supporters of our group decided to make a couple of videos about the challenges of living with lupus. Click the links below to see the videos.
These two videos received a great response, so Shaista asked Daisy (who writes regularly for our newsletter) to take part in another conversation on different subjects. They have just completed two videos – you can watch them by clicking on the links.
Many thanks to Colette, Shaista, Daisy and Shaista’s Mum (who filmed the conversations).