Contact

[Simris]

I have recently been diagnosed with ET and feeling rather bewildered and alone, since it's a very rare condition I don't know anyone to talk with. I would be very keen if anyone interested in getting in touch with me.

Thanks x

[Mazcd Partner MPNVoice]

Hi Simris and welcome to our forum, we all understand how you are feeling at the moment, it is very bewildering and scary when you are first diagnosed, but you are not alone. There are a lot of lovely people on this forum who are more than happy to give you help and support. Best wishes, Maz

[Simris in reply to Mazcd]

Firstly thank you for your lovely welcome, brilliant to know there is someone to chat to when feeling bit down in dumps. Probably just take bit of time to get my head around it all and accept condition.

[Mazcd Partner MPNVoice in reply to Simris]

it will take time, so don't rush yourself, take time to read things, and understand it all, I've had ET for 16 years now and I am still learning things about it. Maz

[Simris in reply to Mazcd]

Yes trying to get as much info as possible but very encouraging that you're still learning after 16 years.

Simris

[Simris in reply to Mazcd]

Hi Mazcd

Would you have any idea if any of your members are from Northern Ireland?? I would be very keen to chat with anyone close to home. Thank you Simris

[Mazcd Partner MPNVoice in reply to Simris]

Hi Simris, I have answered this on one of your other posts. Maz

[Simris in reply to Mazcd]

Okay Mazcd thank you x

[Scottishterrier]

HI my name is alias Scottish Terrier I have had et jak2+ since 1994 It took a while to diagnose but once was put on right medication the only problem I had was 3 clots to liver but as I said right medication I just take things in my stride 3 monthly visits to hospital I do get tired easily I had a fantastic consultant and she told me to have a sleep every afternoon and feel better after it the great thing about MPN voice you can request a buddy someone who is about your age and same diagnosis and a great support to you you begin to find a great bond with them and always think positive it cannot be cured but it can be treated

best wishes Scottish Terrier

[Simris in reply to Scottishterrier]

Thank you so much Scottish terrier, I just joined this group yesterday after being advised by my cpn nurse to try to contact like-minded people and I have to say I've not been disappointed. I have been feeling really lost with dealing with this condition (my husband has been brilliant but he doesn't really understand condition any more than I do). It's very comforting to hear everyone's stories and I think once I've accepted ET it will not be so daunting, at minute Hemstologist is trying to get platelets lowered and then will get me started to manage everything.

Thank you again

Simris

[Cja1956]

I was diagnosed in 2008 with ET. There has been much research since then and new treatments. I only just found this forum last year and it has helped tremendously. Good luck in your journey.

[Simris in reply to Cja1956]

Thank you Cja1956, it is indeed a wonderful forum with so many helpful comments from so many wonderfully helpful people xx

[Capricorndancer]

I feel the same. I have ET and Jak 2. Had a stroke four months ago. Physically i am very lucky but struggling mentally.

[AndyT]

Hi Simris - it is worrying and confusing when you’re first diagnosed but hopefully you’ll find this a very welcoming and supportive community of people who’ve been through the same experience of coming to terms with having a chronic blood condition.

Like Maz I was diagnosed with ET 16 years ago and am still going strong - I was on aspirin only for 12 years and Pegasys for the last 4 due to rising counts and advancing age..!

Feel free to ask any questions or share any concerns and I’m sure people will be happy to respond.

All the best, Andy

[Simris in reply to AndyT]

Hi Andy,

Thank you for your lovely encouraging response to my post. I already feel part of this wonderful family of people. I'm suffering terribly with fatigue and finding it really hard not being able to do everything (my hubby has been brilliant, even tho I'm not too good at asking for help). Hopefully I will soon become better at dealing with this rare condition (& the meds to help get platelets under control). Thanks again

Simris x