News

Our campaign launch at the House of Commons on 3rd February 2015 was sponsored by the Rt Hon Margaret Hodge MP, and following on from this she will now be applying for an adjournment debate in Parliament after the summer recess. This will be to bring our petition before the House to highlight our concerns regarding the diagnosis and treatment of SJS/TEN, the need to improve the level of knowledge and awareness amongst health professionals, and to improve aftercare for those a

Following our awareness campaign launch last February at the House of Commons, Rt Hon Margaret Hodge MP lead a Westminster Hall debate on awareness and funding for the treatment of SJS?TEN on Wednesday 13th July from 11-11.30am. You can also watch the debate live on the Parliament TV website here ( http://www.parliamentlive.tv/Commons ) Margaret Hodge MP will also be putting the debate up on her Facebook page and website after the debate.

The meeting will begin at 12:30 with an introduction from Anita Hanson, Head Research Nurse at the Wolfson Centre for Personalised Medicine, who has been working in research to help SJS/TEN patients for many years. Christine Randall will speak about the Yellow Card Scheme for reporting adverse drug reactions and the Medicines & Healthcare Regulatory Agency (MHRA). Dr Dan Carr will talk about some of the current research taking place at the University of Liverpool that is help

The National Lottery Community Fund Thanks to The National Lottery Community Fund, SJS Awareness UK can support individuals with underlying conditions especially the BAME Community through the pandemic. PHEs report, Beyond the data: Understanding the impact of COVID-19 on BAME groups, found that the highest age standardised diagnosis rates of COVID-19 per 100,000 population were in people of Black ethnic groups. People of Bangladeshi ethnicity had around twice the risk of dea

When faced with rare and potentially life-threatening conditions like Steven Johnson's Syndrome and Toxic Epidermal Necrolysis (TEN), the journey to recovery can be daunting. However, amidst the challenges and hardships, there are stories of hope, resilience, and inspiration that shine through. These survivors' narratives not only shed light on the realities of these conditions but also serve as a beacon of strength for others going through similar struggles. The stories of s

Steven Johnson's Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but serious skin conditions that can be life-threatening. For those affected by these conditions in the UK, finding reliable information and support is crucial. That's where SJS Awareness UK comes in. This dedicated website serves as a valuable resource for individuals and families dealing with SJS and TEN. By providing accurate information on symptoms, treatment options, and support resources avail

Welcome to a platform dedicated to raising awareness about a rare but serious condition known as Steven Johnson's Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) in the United Kingdom. Here at SJS Awareness UK, our primary goal is to provide valuable and accurate information on these conditions, including their symptoms, treatment options, and available support resources within the UK. Our website serves as a hub for individuals seeking to understand more about SJS and TE

COVID-19 mRNA Vaccine BNT162b2 concentrate for solution for injection has been given authorisation for temporary supply by the UK Department of Health and Social Care and the Medicines & Healthcare products Regulatory Agency. This temporary authorisation grants permission for the medicine to be used for active immunization to prevent COVID-19 disease caused by SARS-CoV-2 virus in individuals aged 16 years of age and over. As with any new medicine in the UK this product will b

Professor Munir Pirmohamed, Director of the Wolfson Centre for Personalised Medicine , is supporting Stevens-Johnson Syndrome awareness UK in their bid to receive government support for a national campaign aimed at educating more doctors and patients about a severe adverse drug reaction that effects the skin. The campaign has been presented at an event at the House of Commons, hosted by Labour MP Margaret Hodge. What is Stevens-Johnson Syndrome (SJS)? “Many drugs cause skin r

Tuesday 3rd February 2015 saw the launch of the Stevens Johnson Sysdrome (SJS) Awareness Campaign in the House of Commons. A delegation led by a leading scientist in the field (Professor Munir Pirmohamed), nurses, patients and the CRN: North West Coast visited the House of Commons to launch the SJS Awareness Campaign. The team met with the Rt Hon Margaret Hodge MP to introduce the campaign and most importantly enable survivors of SJS to share their experiences of this disease

Thank you to everyone who gave their time to take part in our survey in December 2014. In total we had 35 submitted surveys - 27 from SJS/TEN survivors, and 8 from a family member, caregiver or friend. We had a further 35 incomplete responses which were not included in the final analysis. The results have been compiled into a set of charts which can be viewed by clicking on this link Survey Results. . Evidence collation The survey was necessary as we needed to gather evidence

The next PPI meeting will be held on 24th September 2015 at 12 noon in our Barking office (our address is at the foot of this newsletter). The research team from the University of Liverpool will be talking to us about participating in SJS/TEN research. Contact details Anyone wishing to attend please contact us by 11th September 2015, please call Nadier on 02082208321 or email info@sjsawareness.org.uk

Colette Ansell, the mother of an SJS survivor who is passionate about raising funds to support the awareness of this rare and complex condition, took on the challenge to participate in the 2015 Brighton Marathon. She says “I managed to complete the marathon in a time of 4 hours 45 minutes, it was a very hot day, and had a bit of sun burn, but nothing quite prepared me for the support of the crowds to spur me on. When the going got tough, I remembered exactly why I was doing t

The SJSawareness UK webiste is to see its 3rd face-lift since it was launched in 2009. The new website is to be launched in February 2015. This also coincides with an appearance at the House of Common where SJSawareness UK will be campaigning for National SJS Awareness and launching the first NHS Awareness Poster Campaign. The website is to be an improvement from the 2 previous sites, which were designed originally when Nadier started spreading the message of SJS/TENS awarene

Funding from Starting Point Starting Point, which is part of the East Thames Group, has been supporting us since July 2013 with affordable 'hot-desking' facilities as well as training. This has rapidly impacted the progress we have made with our administrative setup to date. Charity registration Thanks to the Big Lottery Fund, we finally qualify to proceed with our charity status registration with the Charity Commission. Our application for an Award for All Grant was successf

A patient and public involvement (PPI) group was set up by the Wolfson Centre for Personalised Medicine at the University of Liverpool, who have been conducting research into drug safety and efficacy with an interest in SJS/TEN. At the meeting held in November last year, it was unanimously agreed that awareness of SJS/TEN must start with the medical professionals and ideas were pulled together to design an SJS awareness Poster. We have been working closely with the research t

In the past year, our day to day running costs have been funded by donations received from individuals, organisations and fundraising activities organised by friends and families of those affected by SJS or TEN. In addition to sending donations by cheque or through our website, we can now receive donations through Just Text Giving. Text via mobile phone This can be done on your mobile phones by texting the code SJSA14 with your amount to 70070. You also have the choice to inc