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
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.…
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:…
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…
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…
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…
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’,…
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…
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…