We’re delighted to announce that ‘Saving Lives – how genetics research changed the future for people with aHUS’ won the People’s Choice Award in its category at this year’s Charity Film Awards. The film was made by Kidney Research UK and funded by Answers for aHUS and it documents the story of how a team led by Professor Tim Goodship in Newcastle worked with families affected by aHUS and discovered that it was caused by a genetic fault in the complement system. This work ultimately led to the first treatment for the disease and the establishment of the National Expert Centre.
The video can be seen at :
To find out more about the charity film awards go to:
We’d like to take this opportunity to thank everyone who voted for the film.
The following information has been sent to all patients via email, please check your junk folder and if you have not received this email please do get in touch with us and we will add you to the distribution list (UK patients only)
“We recognise that this will be a worrying time for many of you so we wanted to email you to give you an update on how the National aHUS Service is operating at this time.
We will not be sending out any of our usual paper patient communications. We will instead use emails to communicate any relevant information to you. Additionally our website will be updated regularly to reflect our most up to date advice aligned with current advice from the UK government
We will also share updated advice via our twitter account @NationaHUS
If you require urgent medical advice you should access NHS services as appropriate but as specialist nurses we will continue to provide support for you if required. We can do this via email or if you prefer to send us your telephone number we can call you back.
One of our consultants will continue to be on call at all times to deal with referrals of new cases or to advise local teams on management of current patients. The team meet ‘virtually’ a number of times a week to discuss cases.
We are in close communication with both our homecare companies and will provide an update on their plans in future emails. Please note neither company are currently taking on new patients.
Finally we do not have email contact details for all our patients so if you are in contact with any other patients who may not have received this email please ask them to get in touch.
Our best wishes to you all
Angela & Lisa
On behalf of the aHUS team
IMPORTANT INFORMATION ABOUT COVID-19
COVID-19 and aHUS/Eculizumab
- Patients with aHUS receiving eculizumab should continue to receive their usual dose of eculizumab during the current COVID-19 pandemic
- Patients on eculizumab remain at risk of meningococcal sepsis and should continue on their prophylactic antibiotics and seek medical advice (presenting with your meningococcal risk card) if they believe they have symptoms suggestive of meningococcal sepsis http://www.nhs.uk/conditions/Meningitis/Pages/Introduction.aspx
- Patients in the Stopping Eculizumab Treatment Safely (SETSaHUS) should continue with standard monitoring as described in the SETSaHUS information pack
- If you have previously been told by a medical professional that you are at risk of developing aHUS, standard advice about seeking medical advice with your “aHUS at-risk” card applies if you are unwell and think that you have symptoms of aHUS
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus. Washing hands for 20 seconds is central to the expanded public awareness campaign to prevent and slow the spread of coronavirus (COVID-19).
The symptoms of coronavirus are:
- a cough
- high temperature
- shortness of breath
These symptoms do not necessarily mean you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu
How to avoid catching or spreading coronavirus
- wash your hands with soap and water often – do this for at least 20 seconds
- always wash your hands when you get home or into work
- use hand sanitiser gel if soap and water are not available
- cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- put used tissues in the bin straight away and wash your hands afterwards
- try to avoid close contact with people who are unwell
- touch your eyes, nose or mouth if your hands are not clean
Guidance for all people about possible infection with COVID-19, including when you should seek further medical advice is summarised.
If you have a possible infection with COVID-19, you should also seek further medical advice if you are:-
- receiving eculizumab and are concerned about meningococcal infection
- not on eculizumab at risk of aHUS and are worried that aHUS has been triggered
Health professionals may wish to refer to our website for further guidance about the risks associated with aHUS if required.
Public and Patient Interaction
The NRCTC actively engages with the public and patients throughout the year.
We first held a series of aHUS Patient Roadshows in Durham, Manchester and Bristol in 2018.
Following the success of these meetings, we held back to back aHUS and C3G patient roadshows in March 2019 in London and then again in September 2019 in Birmingham.
The next patient roadshow is planned for Saturday 7th March in London. For the agenda please click here. Also keep an eye on our Twitter page for updates.
Lord Mayor Visit to NRCTC
aHUS Specialist Nurses Lisa Batchelor and Angela Watt welcoming the Lord Mayor and his wife
The NRCTC was delighted to welcome the Lord Mayor and his wife on Thursday 13th February. The Mayor came to hear about the life changing research carried out at the Renal Unit and Newcastle University over the last 20 years culminating in an effective treatment for a rare kidney disease called aHUS (atypical haemolytic uraemic syndrome). This work funded in part by Kidney Research UK resulted in a cure for this type of kidney disease. The Lord Mayor is championing the Kidney Research UK Bridges Walk in Newcastle on June 14th. If you are interested in signing up for the Newcastle Bridges Walk please click here
Charity Film Awards
The Charity Film Awards is an established annual event and this year Kidney Research UK have entered a video capturing the impact genetic research has had on the lives of people with aHUS. Shortlists will be announced in January 2020 with the finalists revealed in March. https://charityfilmawards.com/videos/saving-lives
Great news to hear Kidney Research UK have been shortlisted for their charity video. There were over 400 videos submitted with over 65,000 public votes cast with 125 videos shortlisted. The winners will be announced at a red carpet event in London in the spring. Good luck Kidney Research UK.
Patient Focus Group
The next patient focus group will be held on Saturday 8th February 2020 here at the NRCTC in Newcastle. We will be informing the group on updates from the previous meeting “you said” – “we did” also an update on the SETS trial that is still recruiting, but more importantly we would like to hear from you and we have some suggested topics that we would value your views on. Click here to view agenda.
UK Kidney Week
Our consultants, specialist nurses and other members of the team from the NRCTC will be discussing their work at the annual meeting of the Renal Association at UK Kidney Week 2019. Full details of the UK Kidney Week meeting to follow – a link to the provisional meeting programme is available here.
On the 22nd September we held our first aHUS patient webinar. We would like to thank everyone who participated and for the feedback we received, which we will certainly use as learning for the future. We were very pleased with the interaction during the Q&A session and hope you all found this very useful. For those who could not attend this webinar please find below the presentations and we hope you will be able to join us again in the future. If you do have any questions please contact firstname.lastname@example.org