TTPNetwork presentation at the October 2021 TTP Registry Meeting
TTPNetworkOct21 Registry Powerpoint
TTP and association with COVID-19 Vaccine
Acquired thrombotic thrombocytopenic purpura: A rare disease associated with BNT162b2 vaccine: Comment from Doyle et al.
TTPNetwork Research Results
A couple of years ago some patients from TTPNetwork took part in some research. Here are the results. If you would like to take part in research on TTP pop over to our Research & Study Opportunity page. See results here
Opinion Health Research Study
We have been asked by Opinion Health to invite our French, German and USA based patients to take part in a research study. Please see the attached letter for further information. TTPNetwork will receive a payment for each patient that takes part in this study. Download letter Opinion Health nous a demandé d’inviter nos…
Professor Marie Scully to receive an MBE
TTPNetwork are delighted that Professor Marie Scully has been included in the Queens Birthday Honours and is to receive an MBE for services to blood disorders. This award is well deserved in respect of the ground breaking work during the COVID pandemic. Read the full statement from UCL: https://www.ucl.ac.uk/news/2021/jun/ucl-staff-and-alumni-recognised-queens-birthday-honours Congratulations Prof.…
The Good Grief Trust
A brilliant organisation
Grief & Loss
Many books have been written on how to deal with grief and loss. In our darkest and bleakest moments, we can pick up one of these books and try to make sense of how we should behave or feel following the death of a loved one. We can learn about the process through which…
Groundbreaking discovery
We are proud as punch to see that our Patron Professor Marie Scully has made a groundbreaking discovery in the fight with COVID-19. Here is the article from the Guardian Newspaper dated 13th April 2021: https://www.theguardian.com/society/2021/apr/13/how-uk-doctor-marie-scully-blood-clotting-link-astrazeneca-covid-jab-university-college-london-hospital
Info about TTP and the AstraZeneca vaccine
We know that patients have been concerned about reports that in some rare cases the AstraZeneca (AZ) vaccine has been associated with a blood clotting disorder. We contact our friends at Thrombosis UK to understand if they had any extra information about TTP and risks with AZ vaccine this is what they told us:…
COVID19 and TTP – Vaccine
Prof. Marie Scully University College Hospital, London 22nd December 2020 COVID 19 vaccination and TTP The COVID 19 vaccine is being rolled out and over the next few weeks/months everyone will be called. The majority of patients should have it when offered-currently there are 2 doses. There are a few considerations for patients with…
TTPNetwork’s response to the NICE Decision on the use of Caplacizumab in the treatment of TTP
Update 16th December 2020 The Final Guidance has now been published on the NICE website: www.nice.org.uk/guidance/TA667 TTPNetwork’s response to the NICE Decision on the use of Caplacizumab in the treatment of TTP Nice have today published the following decision: Caplacizumab with plasma exchange and immunosuppression is recommended, within its marketing authorisation, as an option for…
Management of thrombotic microangiopathy in pregnancy and postpartum: report from an international working group
Pregnancy and postpartum are high-risk periods for different forms of thrombotic microangiopathy (TMA). However, the management of pregnancy-associated TMA remains ill-defined…
Cerebral MRI findings predict the risk of cognitive impairment in thrombotic thrombocytopenic purpura
Thrombotic thrombocytopenic purpura (TTP) is a rare thrombomicroangiopathy caused by deficiency of ADAMTS13. Acute neurological involvement is well described, but its long‐term impact requires evaluation. One‐hundred thirty‐one patients, following an acute TTP event, with severe headache or neurological symptoms had a cerebral MRI…
TTPNetwork Webinar 5 – Prof. Scully: TTP the low down October 6th 2020
Webinar 5 of the COVID Lockdown series. Professor Scully gives us the low down on TTP and answers patient questions. This recording has been edited at the request of Prof. Scully.
David’s Story
At first I thought I had a bad cold and sleeping a lot, and then getting chest pains and my urine was very dark. I went to my doctors seen the nurse practitioner she said it’s a cold and my chest pains were indigestion and my urine was because I was dehydrated. She gave me…
Caplacizumab Licensed For Use In Scotland
Fantastic news! I can share with you as of 2pm today the Scottish Medicines Consortium (SMC) have announced that they have accepted the medicine: Caplacizumab through an expedited approach to minimise delay in patient access following the early phase of the COVID-19 pandemic. This means that Caplacizumab will be licensed for use in Scotland. Thank…
Different diseases but still linked – TTP and aHUS
It is not unheard of for someone with atypical Haemolytic Uremic Syndrome (aHUS) to have had an initial diagnosis of Thrombotic Thrombocytopenia Purpura (TTP). There is no statistic for how many have been misdiagnosed, just anecdotal evidence popping up over the years. Such misdiagnosis is often discovered when a patient receiving a kidney transplant presents…
Dr Joanne Doleman’s story
I was honoured to be asked to write a few words for the TTP Network pages about me and my TTP journey. I thought this would be really easy, after all it’s me that has been ill. It’s amazing how hard I have found this though. The time before knowing what was wrong was easy…
Upcoming Event – Walk Local for TTP
Walk Local for TTP 2020 Sponsored walk in aid of TTP Education & Research and related platelet disorders Sunday 13 September 2020 Every year TTP patients, family, friends and the team at UCLH take part in the annual London Bridgathon sponsored walk. This year we encourage you to go local and walk around your…
TTPNetwork Webinar 4 – CNS Joanne Bell 3rd Aug 2020
CNS Jo Bell, the role of the Clinical Specialist Nurse for TTP.
Tribute to Dr Shafi
Covid-19 has left many families devastated by the unexpected and early passing of loved ones. Among the people who have died due to the disease are frontline and key workers, including those, in our NHS, we depend upon to care for us in our time of need. This is a tribute to one such respected…
TTPNetwork Webinar 3 – Prof Marie Scully 30th June 2020
This is the 3rd Webinar in our series. Professor Scully talks about Research and Clinical trial in TTP in the context of TTP in the UK.
The future of TTP in the UK Webinar – 30th June
Announcing: The future of TTP in the UK Tuesday 30th June, 7pm Prof. Scully joins us again to talk about Research and Clinical Trials in TTP – The future of TTP in the UK. Book your free ticket here: https://www.eventbrite.co.uk/e/ttpnetwork-prof-scully-research-and-clinical-trials-in-ttp-tickets-108828450826 Please keep an eye out for a confirmation email from EVENTBRITE. A link…
TTPNetwork Webinar 2 – Dr Dutt 9th June 2020
Dr Dutt talks about Neurological complications in TTP. This video has been edited to remove the Q&A session. Take full advantage of the Q&A’s by attending our webinars in person.
Living with TTP – Acute & Long Term Neurological Complications Webinar – 9th June
Announcing: Living with TTP – Acute & Long Term Neurological Complications Webinar Tuesday 9th June, 11am We are excited to announce a second, scheduled for Tuesday 9th June at 11am. We will be in the company of Dr Tina Dutt presenting to patients on the subject of ‘Living with TTP- acute and longer-term neurological…
TTPNetwork Webinar 1 Prof Scully TTP&COVID19 18th May 2020
Recording of the first TTPNetwork Webinar that took place on the 18th May 2020 during the COVID19 Lockdown. Prof Marie Scully talks about COVID19 and TTP and during her talk answers some pre-submitted questions. This video has been edited to remove questions asked following the presentation as these were of a more individual nature and…
Professor Marie Scully COVID19 & TTP Webinar – 18th May
Announcing: The first ever TTPNetwork Webinar. Monday 18th May, 19:30hrs Professor Marie Scully discusses COVID19 and TTP Book your tickets here: (click the link) https://ttpnetworkprofscullyttp-covid.eventbrite.co.uk A couple of days before the event you will be sent a Zoom link and code which will give you access to the webinar. Please check your spam folder!…
Advice from TTP Clinical Specialist Nurse Ros Newton
We asked TTP Clinical Specialist Nurse Ros Newton about what patients should expect after leaving hospital and beyond: How often should patients expect to be seen once they leave hospital and what tests should they expect? Post-acute episode patients can expect to be seen at least weekly for four weeks, as their…
Kellie’s story
This is me and my story with TTP (hoping this will help anyone who’s new to this situation because we all know how scary this disease can be at first) and to help me to get it off my chest as I haven’t done as of yet. Ok so i was a 25 year old…
COVID19 and TTP Update
Prof. Marie Scully University College Hospital, London 23rd March 2020 I’m sure everyone has heard the PMs speech this evening: stay indoors unless absolutely necessary to travel. From the updated ‘at risk’ groups; patients with rare conditions are considered at risk. TTP is a rare condition but not necessarily at risk. There are 100’s…
COVID19 and TTP
Prof. Marie Scully University College Hospital, London 15th March 2020 As you all know, COVID19 has been heightened to a pandemic. There are continuous updates from Government and senior scientists and many changes are required within the NHS at this time. There may be regional variations but there have had to be significant and…
Walkers triumph at Bridgathon 2019
London Bridgathon 2019 A glorious warm sunny day greeted almost 70 walkers at the annual London Bridgathon sponsored walk. TTP patients, family and friends got the chance to meet each other and take in the sights of the capital. Some decided on a gentle stroll with a picnic, whilst others took steps to…
Sanofi Genzyme Study
TTP Network would like to signpost members to a Sanofi Genzyme study which aims to help better understand what life is like after being diagnosed with TTP. We are looking for people with acquired TTP (aTTP) who have experienced an episode in the last 12 months, and for family members or friends of someone with…
Professor Marie Scully
Professor Marie Scully We are privileged and honoured to have Professor Marie Scully, as our Patron. Professor Scully is an inspirational woman, and Consultant Haematologist at University College London. Prof. Scully has been an unwavering champion of TTPNetwork for many years and her invaluable support has made a huge impact on raising awareness of our…
IQVIA Patient Study
TTPNetwork has been approached by a research company called IQVIA. IQVIA, a global healthcare research firm, is running a research study to explore the experience of patients receiving infusions as long-term treatment for a condition or disease, or on a continuing basis to prevent a condition or disease from occurring, either at home or in…
Discounts
Next of Kin Some TTP Patients say it causes anxiety to think that they might not be able to communicate about their condition if they become unwell or have an accident. Next of Kin are a long established organisation that operates an ‘emergency service’ for anyone, but can be particularly useful for people with medical…
Ann’s Story
One Year On… Sitting on the plane yesterday, flying back from Iraq, I vividly recalled a similar, but much longer journey exactly one year before. I am a TTP survivor. I had been helping facilitate a workshop in Guatemala as part of my assignment as a Humanitarian Aid worker. I had never really shaken…
UK TTP Registry
The United Kingdom Thrombotic Thrombocytopenic Purpura (TTP) Registry The UK TTP registry, involves all sites treating newly presenting Thrombotic Thrombocytopenic Purpura (TTP). From this registry, important epidemiological data will be obtained. Admission and remission samples will be collected. DNA will be collected and analysed from patients wishing to participate to determine if any link…
Upcoming Event – TTP Bridgathon 2019
London Bridgathon Sponsored walk in aid of TTP Education & Research and related platelet disorders Sunday 15 September 2019 Join us for our annual sponsored walk along the River Thames taking in some of the most iconic sites across the capital and raise funds for TTP Education & Research and related platelet disorders. …
TTP Buddies Newsletter – December 2018
I want to welcome you all to the first edition of our TTP Buddies newsletter. I have put this together to share the findings from the recent survey and to start a conversation with you all about TTP Buddies. At the TTP Network we are committed to find ways to bring fellow TTP patients together.…
Seeking Your Views: TTP Network Buddy Scheme
TTP Network Buddy Scheme At TTPNetwork we are committed to improving ways to help fellow TTP patients connect with each other. Through our facebook group we all have access ‘anytime, anywhere’ to a great way to connect with our wider TTP community. Alongside this we also have our TTP Buddy scheme – ‘TTP Buddies’,…
NHS TTP Patients Consultation
NHS TTP Patients Consultation Date: Commencing 7th September 2018 NHS England are looking at creating specialist treatment Centre’s across England for patients experiencing TTP. The public are invited to respond to the consultation. Please invite your friends and family to comment if they wish to. Please also share with any fellow TTP patients.…
TTP Bridgathon 2018: A Great Success
A great turnout for London Bridgathon 2018 Over 70 people joined the annual sponsored walk covering some of London’s most iconic sites. The walkers received a T-Shirt and walking map then headed off to enjoy the lovely sunshine and sites. Some of them including the four legged variety who seemed to love the attention…
Event – TTP Education & Research Patient Day
TTP Education and Research Patient Day Saturday 6 October 2018 – Save the Date The TTP Patient Day will include guest speakers, a buffet lunch and an opportunity to meet other patients. There will also be the chance to put forward your questions to a panel of speakers and get the latest information about TTP…
Upcoming Event – TTP Bridgathon 2018
Sponsored walk in aid of TTP Education & Research and related Platelet Disorders Date: Sunday 16 September 2018 Time: Registration 11am-11.45am (group photo at 11.45am. Walk will start at midday) Location: Vauxhall Park, Lawn Lane entrance (South Lambeth Road), SW18 1GA (nearest tube Vauxhall Station) Please join the TTP Medical Team, TTP Patients…
Jamie’s Story
Hi, my name is Jamie and I was diagnosed with TTP in July 2016. At the time I was 44 years of age and in what I thought relatively good health. I first noticed discolouration to my feet and legs which at first I thought was the beginnings of an infection in my eczema on…
Houda El-Houry Webster
Houda was born in Lebanon and was diagnosed with lupus when she was only nineteen years old. She never ‘suffered’ with the disease. Instead, she probably lived life more fully because of it. She loved to travel and would always make the most of the moment she was in. We never even knew she was…
Support This Site & Help Keep Us Running
On 11th May 2018 we celebrate 20 years since a small article in a UK Womans magazine asking if anyone had heard of TTP and from that article the TTPNetwork was born! Since the early days we had a website but in recent years as technology has moved on we have needed to pay to…
TTP London Bridgathon
Another great day for TTP London Bridgathon Over 90 people took part in the 2017 sponsored walk to raise funds for TTP Education & Research. Despite the forecast for rain, the weather was fine and there was every age group represented from toddlers in prams to pensioners, with even a couple of our four…
6 Top Tips For A Healthy Diet & Lifestyle
After being diagnosed with TTP most people make positive changes in their food and lifestyle. Find out what your body needs to stay in good health and avoid getting overtired, this is the time to look after yourself and avoid infections as much as possible. Eat A Balanced Diet Base your meals on starchy foods…
Travel Translation Documents
TTP patients often worry about travelling abroad and what would happen with their treatment if they had a relapse or felt unwell in a foreign country. The first letter below, in English, can be used to give to a hospital or doctor in this country and often abroad, however, it has also been translated into…
Gemma’s Story
Saturday 20th August 2005 was like any other day, apart from the fact that my husband and I were going on holiday to Spain. Our daughter Gemma had kindly offered to take us to the Airport. We were due to leave home around 6:15am and as usual it was a bit of a struggle getting…
Jo’s Story
In 1995, aged twenty-four, Jo M. was diagnosed with a rare blood condition Thrombotic Thrombocytopenic Purpura or TTP. Jo felt lonely and confused and wanted to speak to others who had been in a similar situation. She quickly found that as the condition was so rare, there were no support groups or opportunities to contact…