Welcome to CVSA UK
We are a registered charity providing information and support to sufferers of
Cyclical Vomiting Syndrome and their families.
Please remember to update us if your email address changes.
Sponsored Bike Ride
Jo Blaney and Cheryl Robertson are organising a bike ride from
Edinburgh to Glasgow in support of CVSA.
Please publicise this and support them
24hr livestream
Charlotte Rose held a livestream gaming event in support of CVS. She raise a lot and created a great event, thanks to all who took part and supported us.
The first clinical trial for a CVS drug
The vast majority of drugs for treatment of many conditions and diseases used in children are not specifically licenced for such use. They are give "off label". It is a medico-legal issue and the prescriber does it at his/her own risk. Simplistically, this is because trials in children may pose financial and ethical barriers for companies so they will rarely sponsor them unless the potential return is very high.
The market for drugs to treat CVS is quite small and trials can be very expensive. So no drug used to actually treat CVS has ever been licenced for the specific use to treat CVS. Use to treat vomiting in other conditions and situations, e.g. in cancer chemotherapy-induced vomiting may be licenced in adults.
That is why this is big news. The drug is not new, the method of delivery is. To have a clinical trial of a drug specifically in CVS is a big step. This is a long way from it being licenced specifically for this use but it's progress. The trial is recruiting now, and is USA only. One to watch!
Another differential diagnosis
Some childhood onset symptoms that may be diagnosed as CVS, might be a completely different condition. We know CVS symptoms are common to many conditions, and only when they have been ruled out should someone be diagnosed as having CVS.
Jansen de Vries Syndrome was relatvely recently recognised, 2017, and there are diagnostic tests available. Presentation of symptoms is variable but develpmental delay is the most prevalent and repeated vomiting episodes are common.
Currently there is no "cure" and treatment is largely supportive. There is a support group in the USA who can provide more information. It would be sensible to ask your medical support, if this syndrome has been ruled out in those sufferers who display the symptoms listed on the de Vries website.
Sign the petition
https://petition.parliament.uk/petitions/574640
Cece's CVS Story
Update: Cece was interviewed on BBC radio Oxford and the recording can be found here. Thanks so much to her for all her efforts in supporting CVSA UK
https://www.bbc.co.uk/programmes/p08th9ld
Her segment starts at approx 9min 35 sec.
My name is Cece, I’m 25 and have had CVS for almost 15 years now but am still learning how to cope with it. I’ve found CVSA UK a source of help and inspiration, and so I first wanted to thank you. The family days have helped myself and my family get help and seek the right doctor after years of searching.
You have to be a very strong person to get through life with CVS and so I think it’s about time the world recognised those who suffer from, or care for those with, the condition. I desperately want to support the work CVSA do and so, after 2 years work, I’ve published my first book, “Chikara: Stronger Than You Look” in which I describe my travels in Asia as a young female CVS sufferer – hoping to inspire but also raise awareness about the condition.
I have just released the book, have released the book to raise awareness and give a voice to the silent CVS Warriors around the world. I will be donating 15% of Author Royalties to CVSA UK, to support the great work they do. I would also like to donate 15% of any Author Royalties that I may make to CVSA U.K..The book is available on Amazon in Kindle or Paperback form.
Cece (Charlotte Ruth Clark)
PLEASE Sign up for Amazon Smile- for this purchase and any others you make. You pay the same but the Charity receives a small payement from Amazons profits.
It's simple and takes seconds and can really help us.
Thanks to Marilyn Sanders for a top tip...SMILEMATIC is a free browers extension (Chrome Firefox Opera and Safari)it automatically sends amazon links to the amazon smile site so you never forget to support us- download it now!
Fundraising
You can now use Virgin Money Giving to support us. If you are planning an event or sponsorship,
contact us and we can setup a page to publicise it.
We have a research Fund Page you can contribute to now
Contact can assist parents and careers of children with disabilities.Adults, please see below.
Jackie has offered to try an help anyone interested in finding out more on benefits you can email her here:
Contact, the charity she works for can be contacted here:
Freephone National Helpline
0808 808 3555
Monday to Friday 9.30am – 5.00pm
Scope may be able to offer some advice to adults
Start Shopping on Amazon Smile and Support CVSA
It is really simple and costs you nothing click on the link below, search for Cyclical Vomiting and choose it, from then on everytime you go to the Amazon site you will be prompted to choose smile and support us, you pay the same price, we don't track purchases or anything else, but we do get a small payment from Amazons profit on the sale.
Smile
Donate
The methods below are just some of the ways you can contribute. These methods have very low admin fees compared to some donation sites.
Click the logo below to support us via GoFund Me
Clcik the logo Below to support us via Virgin Money Giving
AWARENESS DAY March 5th
Thank you to everyone who contributed to last year's Awareness day.
We hope all the CVS societies and supporters around the world had a great day and that we have started something that can only grow and grow and help more and more people.
Have you got your T shirt yet?
Fruit of the Loom brand, heavy cotton. Order from the Awareness page
Organising an event? We now have a MyDonate page where you can collect funds online, link below - its simple to set up and all money raised comes to the charity- no fees applied.
Can You Help ?
We need help with the committee, most roles don't take up much time.
PLease let us know if you can spare some time to help us keep CVSA working for all CVS sufferers.
A description of the roles can be found here
Please consider sending your story and sharing it in our next Newsletter. We really appreciate your input and our members find hearing others experiences very helpful.
Buy Trolley Coins/Keyrings Ribbons and Wristbands to support CVSA
T-shirts can be ordered now! In Stock
see our Awareness Day page
New: CVSA eBook available on the Apple iBook store for Mac, iPad and iPhone- free
Resources
We hear of many sufferers who don't think they are being treated seriously, and struggle to get diagnosis or treatment. Some people have their jobs at risk due to what appears to their employer to be unexplained absences. Parents face the same issue with schoools, when a child has not got a diagnossis they recognise.
Thanks to a member for providing links to some useful resources:
As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change.
For the past 50 years we've been driven by carers raising their voices together to call for change and seek recognition and support.
A charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers.
Our advocacy service is a free and confidential service available to anyone who wants support to make a complaint to the NHS.
Seen a health claim that's too good to be true? Then Ask for Evidence
All medical information on this site has been reviewed by our Medical advisors, shown below, people's individual stories on our Experiences pages are their own views and do not constitute medical advice. Our site contains advertising links that help support the charity. Neither the trustees nor any of our medical advsiers benefit in anyway from these links and have no commercial links to our advertisers.
Dr Sonny Chong Consultant Paediatrician Queen Mary’s Hospital, Carshalton, Surrey
Keith J Lindley BSc (Hons) PhD MB MRCP(UK) MRCPCH UCL Institute of Child Health, Great Ormond Street Hospital
Dr Ishaq Abu-Arafeh, Consultant in Paediatrics and Paediatric Neurology Forth Valley Royal Hospital and the Royal Hospital for Sick Children, Glasgow
Dr Alberto Ravelli Pediatric gastroenterologist and hepatologist Brescia University, Italy Dr Simon Moodie Consultant Gastroeneterologist Epsom & St Helier NHS Trust Surrey Dr Maureen Lawson Consultant Paediatric Gastroenterologist Great Northern Children's Hospital Newcastle
The information on this site is provided to help you understand CVS and support sufferers but is not intended to replace any advice from your own health care professional.
Confidentiality
We do not sell or pass on any personal information you may provide us if you contact us to any 3rd party. We maintain a database of membership, members can request paper records are kept and opt out of the database entry.
About CVSA
We are an all volunteer organisation, a registered charity with all funding being provided via the sponsored links on our purchase pages, membership fees and by voluntary donations.
Advertising
Our editorial content is not influenced by the funding sources. Our website hosts sponsored ads and links from which the charity earns a small income, 100% of this income is spent on supporting the charities aims. We don't accept advertising from any adult-orientated material or from advertisers promoting any "treatments" for CVS.
Our website hosts advertising banners only. Advertisement is distinguished by the word ‘Advertisement’
Privacy Policy
We hold data on members for the purposes of sending them newsletters and other charity-related emails. We ask members who in the family has CVS and if the member provides that information we will record that data. We ask members if they would be willing to speak to journalists, and if they agree we will pass their details to a specific journalist for the purposes of a potential article/radio or TV interview. Occasionally we may ask members if they wish to take part in medical research relating to CVS. We will never pass details without asking.
You can ask to be removed from our list at any time and we will completely erase your data. If you wish to see what data we do hold on you please email info@cvsa.org.uk. We never pass or sell your information to any third party without your explicit consent.
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verify here.
| Email info@cvsa.org.uk Page updated: 15-may-21 |  |
Helpline 0151 342 1660 |
Charity Number 1045723