A guest post from KATIE MELOY
Today I attended the 20th Anniversary and convention of the ‘ITP Support Association’. I was very eager to attend after very recently being diagnosed with the condition. I’m pleased to say that I was not disappointed and would urge anyone looking for support, help or information to attend.
The convention catered information in all aspects of ITP: from pregnancy, childhood and adult ITP and also different severity’s (acute, persistent and chronic ITP). It was a very laid back open atmosphere where every question, opinion and experience was valued.
The patient mixers really helped give me confidence that I was not alone, and that many people were going through, or had been through something similar throughout their own ITP journey. I left the convention with much more than a book full of notes, but a fulfilment within myself that I was part of something.
Before attending the convention, I was really unsure of what to expect, and to be honest, despite knowing a fair amount about ITP, I didn’t know very much about the ITP support Association.
So I’ll start by filling you all in: The association is a UK based charity founded in 1995. Since 1995, it has held 17 annual conventions and it is the soul founder of the ‘child charity fund’. In 1999 the 1st research appeal was made by the donations and fundraising events held by fellow ‘ITP’ers’. It continues to make a considerable difference to not only ITP research but to the people diagnosed with this rare disease/disorder with these donations.
As the day went on, we were introduced to Adult and Child ITP specialists Dr Jecko Thachil (who had us laughing almost all the way through the presentation) and Dr Nichola Cooper (who seemed to really care and value the experiences shared). We also heard from Dr Angharad Care a Obstetrics doctor from Liverpool’s women hospital about ITP & Pregnancy. There was a vast amount of information shared, and if I was to write it all down in this post would probably be around 10 pages long! Purely meeting each specialist, and having the opportunity to ask them questions really gave reassurance about treatments and helped to give insight into how the body works regarding platelet destruction and production.
Lots of points were made regarding when is best to treat and not treat a person. I say ‘person’ rather than ‘patient’ as Dr Thachil questioned: ‘Why use the word patient rather than person? Is it because you have been waiting too long to see a doctor?’ There was concept by Dr Care that if we were all ice cubes, and thrown onto a fire we would all react the same and melt: if we were all hurricanes, we would all be unpredictable and not one path would be the same. Every person is a hurricane and none of us will react the same. Where treatment is concerned, every person will need treating at a different point and with different treatments that work for them individually. No one incident is the same, and that is why finding a so called ‘cure’ of ITP is so difficult. All the specialists agreed that for them a safe count is 20+, however they will only treat a person if there quality of life is being affected or they are concerned at high risk because of symptoms. Most of the time, side effects of treatments can be worse than the ITP symptoms.
Something I found particularly interesting that was brought up in conversation was the correlation between symptoms and counts. Most people suffering from ITP also suffered from fatigue. Many thought fatigue must mean a crash in platelet counts, however often had a ‘high’ ITP count or equally, felt fine and had a low count. Theories were that the body used more energy maintaining the higher count causing fatigue. It would be brilliant if something like this was proven. It has only recently been proven there is a link between fatigue and ITP at all!
For me, this was incredibly reassuring. Sometimes I felt I was over reacting or being paranoid when overly tired, so to hear it was such a wide spread problem within ITP was music to my ears! It was interesting to hear that symptoms such as petechiae/purpura and bruising were not always present went counts were extremely low as well.
For me the whole experience was brilliant. Some people attended for information, others for reassurance and support. I believe everyone took something away that day. For me, I left with confidence of knowledge, reassurance within myself and of my body, support of knowing I was not alone, and a handful of raffle prizes. I could not recommend attending a conference or convention more, especially to any first time attendee’s. I will 100% attending the next convention, even if it means having an IVIg shot to get me there!