still getting my head around ET

[Staroftheday]

hi guys this might seem a sully question , but have a got ET and the jac 2 gene 🧬 for life , I got the hospital later to get my bloods done , I got diagnosed in June and his yr , Thank guys your feed back will be much appreciated xx

[hunter5582]

Hello and welcome to the forum. this is a great place to find support and get information from the perspective of others with MPNs.

Wrapping your head around ET can take a bit of tie and work. I was diagnosed with ET about 30 years ago. It progressed to PV about 9 years ago. I have lived a good life while managing ET/PV and at age 67 plan to keep doing so.

While you will have heard that ET is a cancer, know that it is a chronic condition not an acute condition. It is similar to something like diabetes in that it is something that can be managed for a long time. Some of us think of it as cancer with a little "c", not cancer with a big "C". It is a truism that you are more likely to die with ET than from it. Most people with ET will live a relatively normal lifespan.

There can be issues to manage with ET other than thrombosis, hemorrhage, microvascular symptoms. The JAK2 mutation does more than make too many blood cells. It also causes the body to make too many inflammatory cytokines. This is thought to be responsible for many of the secondary conditions we experience. At the core, MPNs are inflammatory disorders.

One thing to know is that you will have plenty of time to learn all about the issues created to the JAK2 mutation and ET. There are excellent resources available, like the MPN Voice website. There are very informative forums and trainings available. Treatment options have improved and there are new treatments on the horizon.

One of the most important things at this point is to be sure to consult with a MPN Specialist. MPNs are rare disorders and most hematologists do not have much experience with them. Optimal treatment requires input from a provider hat has MPN expertise. Just in case you need it, here is a list. mpnforum.com/list-hem./

All the best moving forward.

[kevmince]

hi,

I'm glad you found us, I was diagnosed 25 years ago and wish I had such a resource then, knowing you are not alone can be a great comfort ,and there is a wealth of knowledge and experience here so please do ask questions , odds are someone on here will know.

diagnosis is a huge life event, and it will take time to wrap your head around it, there is no timetable, but from here you will see that many people live pretty normal lives with ET, it's a condition that is managed and life goes on

good luck



[nemi11]

Hi Starftheday! You are not alone, don't worry. I have it too and this forum has helped me a lot to manage my emotions and fears.

[Minu68]

I got diagnosed with the same over 2 years ago now. It was a shock, and though I am used to having it now, it has taken time to get to understand and accept having this lifelong condition. This forum has been great, just for support, or for information on anything. Take your time taking in all the information.... it can feel overwhelming. Now, I still learn new things about how ET affects me, but my knowledge and understanding is deeper than most health professionals I deal with. It is a rare condition, and knowledge will give you power to improve your self care as well as help support you when dealing with health professionals who don't understand our condition and its symptoms.

Welcome to this exclusive club, as Hunter puts it sometimes, and keep asking anything you want to know about or use the search button and you may well find it has been discussed here already and there will be some useful information for you. Take care x