Hi there Macca's Mum...
Absolutely lovely to be making your virtual acquaintance.
My name is Steve, I am the MATES Admin, & one of the co-founders of our little MPN website Forum.
So happy that you have found your way here, & I shall do my best to provide you & your son w/ whatever advice I can.
Firstly, yes, I have spoken w/ Prof. Manoharan at St George's Hospital, and yes, he has treated people w/ MPNs for some time, as I understand things. I am also aware of the fact that he likes to Test for Platelet 'Stickiness' too...
Your son is quite young, & generally speaking, most young people w/ Essential Thrombocytosis (ET), are usually just placed on Low Dose 100mg daily of Aspirin, (to help keep the Platelets at lower levels, (c. 150-450k).
Sometimes, when this doesn't work, patient's might be asked to take Hydroxycarbimide (HU), this is an older type of oral chemotherapy drug. However, it is only prescribed if the doctor feels the Aspirin alone is not enough.
There is also another MPN Specialist who is located on the Central Coast, (Gosford), & her name is Dr Cecily Forsyth. Dr Cecily is an MPN Specialist who particularly likes to use a medication known as "Inteferons". Many of the MATES members w/ ET in particular consult w/ Dr Cecily, & I am sure that some of them might be along soon to suggest that Dr Cecily has an excellent bedside manner, & is extremely knowledgeable where MPNs & Interferons in particular are concerned.
Sadly, in Australia, MPN specialists are even more rare than the MPN conditions themselves, in my view...
However, there is a great deal of information here on our website about MPNs, & I will place a Link below to help you navigate around the site so you might be able to research a tad more for yourself...
First Link: What Are MPNs?
https://www.mpn-mate.com/mpns-what-are-they/
2nd Link: What is ET?
https://www.mpn-mate.com/essential-thrombocythaemia-et/
Happy to offer what advice I can, but please remember we are all just patients here too, just trying to share our knowledge & experiences of having an MPN. Definitely find a good MPN Specialist for your son to consult with, & please do try to remember that not everyone that develops ET goes on to later stages like Myelofibrosis (MF) or Acute Myeloid Leukaemia (AML).
Even if they do, that doesn't have to mean that the worst is about to unfold either... In my own case, I was diagnosed in 2016 w/ Post ET / MF, I also have CALR the Driver mutation 'Type2' (there are about 50 types), ASXL1+ (High risk mutation), & Von Willebrands Syndrome (VWS)), which simply means that my Blood Platelets can become very 'Sticky' which can in turn cause minor brain strokes known as Transient Ischemic Attacks (TIAs). I am still here, & in April this year I cycled 600kms in 5 Days to raise MPN Awareness & Funding for MPN Research here in Australia... I am 62 yo.
MPNs are generally regarded as long-lasting chronic illnesses... & most people live absolutely full & near normal lives, (bearing in mind we are all now living in a pandemic too... )
Keep smiling, stay safe, happy & well...
Best wishes
Steve
