Support

[Presley1935]

I am recently diagnosed with ET and was wondering where my wife could get support? Just being able to talk to other family members who are helping a loved one with ET.

Thank you 😊

[hunter5582]

You started off in a good place here to find support. This is one of the best forums for people with MPNs. There are various live webinars and in-person MPN events in the USA, UK, and other places. You will often see these events posted on this forum.

Wishing you all the best as you enter this journey.

[Otterfield]

I'm sorry about your recent diagnosis. I think that your wife will benefit from this forum along with you. You will both learn that ET does not have to be a frightening disease and it is unlikely to shorten your life, as long as it is well managed. Hopefully your wife will accompany you to appointments and you can learn and adjust together. I suggest that you ask to be referred to an MPN specialist if you are not already seeing one. Good luck, you and she will be fine, Jennie

[Presley1935 in reply to Otterfield]

Thank you so much. I thought this was just for MPN patients! Silly me 😜

[Otterfield in reply to Presley1935]

Not silly at all! You are new to all this and very welcome 🙂

[katiewalsh]

Hi Presley, your wife is allowed to post questions on here too. You can ask one of the administrators of this forum if there are support groups for partners of patients. My guess is that your wife, like most of us patients, will get over her initial fear as you learn more and more time passes. If you can get access to an MPN specialist, as already suggested, you’ll be in good hands. When I was diagnosed in 2014 I was told I’ll most likely die from something else when I’m old. Any concern or questions you have just ask here. We’re all here to help each other. Take care & say ‘hi’ to your wife from us. Katie

[lizzziep]

I’m sure she would benefit from this forum, she can just read the posts or ask questions. I have ET but have far more trouble from my arthritis than the ET! Hope all goes well for you. 😊

[Bouillabaisse]

I support my husband and find this forum invaluable (he is newly diagnosed). However, it’s not just about understanding the disease but also about changes in coping with a partner who is initially stressed, suffering fatigue etc. For us it’s a big change - short walks instead of long walks. Making time for a nap in the afternoon - changed both our lives.

So I understand how she feels and would also like a support group for partners.

[Hopetohelp]

Welcome to this site. We are all here to help and support

[MAP44]

Welcome to you both. You can search topics or old questions all night long and get a variety of supportive answers here. Feel free to ask any questions too.

We all have a similar story. Diagnosis of a rare form of cancer that no one has heard of. Wrap your head around it, get informed, understand treatments and then go live your life. Hi from 🇨🇦

[Mazcd Partner MPNVoice]

Hello Presley1935, welcome to our forum. It is so important for our partners and family members to get support, which is why we started quite a few years ago offering buddy support to partners/family members, being able to talk to someone who understands what it feels like to support someone with a MPN can be so helpful, if your wife would like to be put in touch with a buddy then please email me at [e-mail]. Best wishes, Maz