To celebrate 25 years of patient support we announced the start of an annual award for Exceptional Services to TTP Patients. Each May we will announce a winner, selected from nominations made by patients and their families. The nominate person can be a patient, family member or healthcare professional. For the inaugural award for Professor…
Follow the link for some helpful videos produced by UCL https://www.uclh.nhs.uk/ttp
TTP service announcement TTPNetwork Specialist Centres
Click above to read more about the Registry
TTPNetworkOct21 Registry Powerpoint
Acquired thrombotic thrombocytopenic purpura: A rare disease associated with BNT162b2 vaccine: Comment from Doyle et al.
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
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.…
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
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:…
Pregnancy and postpartum are high-risk periods for different forms of thrombotic microangiopathy (TMA). However, the management of pregnancy-associated TMA remains ill-defined…
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…
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…
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…
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…
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’,…
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…
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…
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…