Raising the standard for TTP awareness

Thrombotic thrombocytopenic purpura (TTP) presents as a medical emergency, rapid diagnosis and access to care is critical.With the current pressures on NHS intensive care units due to COVID-19, it is important rare diseases such as TTP aren’t overlooked.2

At Sanofi, we are dedicated to raising awareness of Rare Blood Disorders, including thrombotic thrombocytopenic purpura (TTP). We are committed to breaking down barriers to support healthcare professionals in understanding the signs and symptoms for a more rapid diagnosis, particularly as TTP presents as a medical emergency.

TTP is an ultra-rare3, complex, and life-threatening1 blood clotting disorder. It is both an acute condition and a chronic disorder, affecting around 330 individuals in England, with survivors remaining at risk of relapse for the rest of their lives.4

Rapid diagnosis and access to care is critical; mortality can be as high as 50% unless patients with TTP are referred to a specialist centre.5 TTP demands the same urgency as conditions such as heart attack and stroke,6 however, there is low awareness of TTP, even amongst healthcare professionals in emergency care settings. With the added pressures of COVID-19 on the NHS, in particular intensive care units,2 it is even more important now to make sure these conditions are not forgotten.

At Sanofi, we are serious about preventing deaths from TTP and are committed to breaking down barriers and supporting the medical community to identify signs and symptoms of rare blood disorders. We are finding new ways to improve communication in healthcare settings and support people with TTP manage their care with confidence.

With the impending NHS roll out of additional specialist centres,4 we are amplifying the patient voice and highlighting the critical need for early diagnosis and referral.

“I think it is very important that when someone is diagnosed with TTP that they are taken to a specialised centre. Had I been diagnosed where I’m from originally, I don’t think I’d be here to tell the tale, as there isn’t a specialist centre up there.” – Louise

 

“I’m really fortunate that I can access a specialist TTP centre in Liverpool which is about an hour and half drive from where I live. This is a great support because they have specialist expertise and I am getting a regular test and it is that regular test that gives you reassurance, otherwise you would be worrying all the time about exactly what is going on.” - David

David and Louise both live with TTP and share their stories in the videos below. They take us through their diagnosis journey, signs and symptoms, what it’s like living with TTP, and tell us why it’s important to get a rapid diagnosis and referral. These videos were filmed during this recent period of lockdown so both had to act as the director, producer and camera operator, as well as the leading role! Thank you, David and Louise, for sharing your stories with us.

References

  1. Berangere, J., et al. ‘Thrombotic thrombocytopenic purpura’. Blood. 2017;129(21). Available at: doi.org/10.1182/blood-2016-10-709857 Last accessed: March 2021
  2. Pimentel,M., et al. ‘Trajectories of vital signs in patients with COVID-19’. Resuscitation. 2020;156. Available at: https://doi.org/10.1016/j.resuscitation.2020.09.002. Last accessed: March 2021
  3. Knöbl, P. ‘Thrombotic thrombocytopenic purpura’. Magazine of European Med Oncology. 2018;11:220. Available at: doi.org/10.1007/s12254-018-0429-6 Last accessed: March 2021
  4. NHS England. ‘Integrated Impact Assessment Report for Service Specifications’. 2018. Available at: https://www.engage.england.nhs.uk/consultation/thrombocytopenic-purpura/user_uploads/thrombotic-thrombocytopenic-purpura-impact-assessment.pdf  Last accessed: March 2021
  5. Scully,M., et al. ‘Regional UK TTP registry. Br Journal of Haematology’. 2008;142(5): 819–826. Available at: doi.org/10.1111/j.1365-2141.2008.07276.x Last accessed: March 2021
  6. Benhamou, Y., et al. ‘Cardiac troponin-I on diagnosis predicts early death and refractoriness in acquired thrombotic thrombocytopenic purpura’. Journal of Thrombosis and Haemostasis. 2015;13(2). Available at: doi.org/10.1111/jth.12790 Last accessed: March 2021