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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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!…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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. …
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.…
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 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.…
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…
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…
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…
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 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…
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…
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…
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…
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…
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…
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…