ITP AWARENESS - Looking forward to RARE DISEASE DAY 2020

By Anthony Heard

The annual ITP September Awareness Campaign has now come to a close after a wonderful purple tinged month. With contributions from all corners of the globe we have once again drawn attention to ITP in spectacular fashion.

A huge thank you goes to every single person who took even the smallest action to spread awareness of our enigmatic condition. Whether it be writing a blog entry, an article, Tweeting or Facebooking about it or sporting Purple for Platelets, we have all done a fabulous job.

 

As a relatively rare illness we all know that ITP can easily be lost amongst so many other very worthy causes. So as we end the September awareness campaign we need to keep the focus on our condition. One major International initiative which can help us to keep the attention on our illness, as well as other rare diseases, is Rare Disease Day, held on the last day of February every year.

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 people. 

ITP is most definitely one of those rare diseases. There are between 6,000 and 8,000 known rare diseases and around five new one’s are described in medical literature each week. 

The vast majority of rare diseases will affect quite small numbers of people – some will touch only a handful of people, or even a single person in the whole of the UK. To put things in purple perspective, it is thought that there are about 4000 to 5000 ITP sufferers in the UK at any one time.

It is estimated that 1 in 17 people, or 6% of the population, will be affected by a rare disease at some point in their lives. This is about 3.5 million people in the UK and 30 million people across Europe. 

We ITP sufferers know the frustrations and uncertainty around there being no cure for our illness, albeit we have numerous treatment options. We also understand the problems of diagnosis because ITP is diagnosed by exclusion where all potential causes for our reduced platelet count are ruled out before ITP is confirmed.

My ITP diagnosis took 8 hours on a worrying Friday night in my local A and E (Accident and Emergency) because the hospital did not have anybody on site with ITP expertise at the weekend. That is by no means as wretched as some other people’s experiences, but it was still pretty harrowing, and it doesn’t mean we shouldn’t aim for improvement.

Rare Disease Day improves knowledge amongst the general public of all rare diseases while encouraging researchers and decision makers to address the needs of those living with rare illnesses. 

So, although it may seem like a long way off, please do put a note in your diaries for Rare Disease Day February 29th, 2020. Check the websites listed below to keep in touch with plans for the event and do try to join in.

Rare Disease Day – Useful links

What is it all about -  https://www.rarediseaseday.org/article/what-is-rare-disease-day 

How to get involved -  https://www.rarediseaseday.org/article/get-involved 

Rare Disease UK -  https://www.raredisease.org.uk/about-us/