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…

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…

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…

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…