MPN in the news

[Rae25]

Hi all,

I thought you might be interested to see an MPNer has made the UK news. Story below 🙂

Please note that Rae has explained that she is not Laura, the lady in this article, Maz.

'I had a mole removed for vanity- only to be told I had a rare cancer'

mol.im/a/9513709

[john0084]

Thanks for the post,a good read

[sweetpea19]

Thankyou for the link To get this in the news is hopefully going to make more aware of our MPN’s as we don’t get much exposure. It was quite an in depth feature . Thankfully she is getting help with her ET . Take care

[Tico]

Yes like sweatpea stated, very in depth and informative. Tina.🤗

[Superwoman]

Hi Laura, the funny thing I read this article this morning and wondered if you would post on here, I also have ET JAK 2 positive had it since 2013 and take Hydroxycarbamide and Aspirin. You are very lucky that it was found early, as I myself think I had lived with it for years as always had something wrong with my health and not much was known about MPNs when I was young.I now have I feel good health since being on Hydroxycarbamide and platelets are well controlled, I keep fit eat a good diet, drink plenty of water at least 2 Ltrs a day to keep well hydrated especially being on Hydroxycarbamide, still enjoy a glass or two of wine now and then which is my only vice, so don't be afraid for the future you can and will enjoy it to the full.

My Daughter, her name is also Laura, was diagnosed last year also with a rare cancer called Parosteal Osteosarcoma, she had her thigh bone removed and replaced with a Titanium from the hip to the knee, they got clear margins at the time but unfortunately for her it has gone to her lungs, which this particular cancer should not of done, its very, very rare for this to do but it has, she has had two small nodules removed, but there are more in both her lungs, and for her its now going to be watch and wait, and if needed they will do Ablation to remove the nodules as Chemotherapy will not work on this type of cancer and that only if they grow, she has just turned forty and has a young family, so I know exactly how you must be feeling, but be assured you will have a good future and normal life span with ET.

So welcome to MPN voice we are all here for one another, its a great place to be. And thank you for bringing it to the media.

Jean x

[socrates_8]

Hey Rae...

Great article concerning your eventual diagnosis of ET...

Thank you so much for sharing with all of us too...

Best wishes

Steve

[Tico in reply to socrates_8]

Morning steve, I don't think the article is about the poster Rae, her profile says she is 37 wereas ' Laura' is 28 when diagnosed in 2020. It is a little confusing, I thought the same at first glance. Tina.🤗

[Rae25 in reply to Tico]

Hi Tico, you are correct - I’m sorry for any confusion I have caused! I saw the article and wanted to share with everyone, so I copied and pasted the link (including headline). I’m not Laura, just another MPNer. Sorry again everyone 😕

[socrates_8 in reply to Rae25]

Ah... Got me again!!! 😱

All good... Good story in any event, & thank you for Posting it Rae...

Thanks too Tina...

Steve

[Mazcd Partner MPNVoice in reply to Rae25]

Hi Laura

thank you for sharing the link to the article, very interesting, and also thank you for explaining that you aren't Laura. Best wishes, Maz

[Tico in reply to Rae25]

🤗🤗🤗

[Jlah]

Glad you were diagnosed before anything serious happened. Take care. Jx

[jointpain]

Just like the Daily Mail not to get things correct, "While the average person has between 150 and 500 platelets in a litre of blood, Laura had 7,428."Where did they get their figures from?

[Aldebaran25]

I like that they were quite detailed about it, good article

[Townie]

Yes I read that today, at last it’s made news. I’ve had ET for 29 years and knew nothing about it until the last few years. The young lady in the article is only 28 and she has been told that she has it for life the same as us, so let us hope they will find a cure for it in her lifetime.

[Bluetop]

Thanks for posting!

[Wyebird]

Unbelievable to have such high platelets