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I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (111)Comment receiving replies
Hi @birgitr. Oh gosh, thank for such a lovely comment. I can assure you, 7 years ago when I was in a battle for my life it never occurred to me that I’d be a mentor for anyone in the future! But, getting through it all, surviving, overcoming…well, it changed me. Throughout the past 7 years, I’ve met so many outstanding and simply amazing people from my medical teams to complete strangers that showed me such compassion, helping to save my life, assisting me at some of the lowest points in my life and offering me hope. So, to be able to offer some encouragement and hope to anyone going through a blood cancer journey or to mentor anyone having a stem cell transplant, it just feels like a privilege. ☺️
Actually, because you asked about my life, a couple of years ago Mayo published a little Spotlight article about me. My life hasn’t changed much since it was written. I still walk many miles daily, exercise, spend several hours in Connect and devote time to watercolor, making journals, sewing, etc.. I’m always busy.
Here’s a link to my little bio.
I’ll take an order of Hope with a side of Mayo, please! - Meet @loribmt
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/
So I have to ask, since you mentioned learning English…which I’m so impressed you’re taking on, because it’s so complicated…are you from Germany? One of my closest friends and penpal from Germany share’s your name, Birgit.
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@loribmt Thank you so much for your encouragement and sharing the link to this interview. While reading your story and your particular view on life I was absolutely exhilarated. I particularly perceived real wisdom and exactly this is the kind of attitude I am craving for. To be able to support every single person in the community with so different outcomes and experiences in there cancer journey is remarkably attentive and compassionate. Thank you 🙏 so much for your perspective on life, the importance of cherishing every moment is crucial . The wide range of hobbies you follow up additionally to your engagement in the mayogroup is incredible, I am impressed 🤩.
Yes I am from Germany as you have guessed and honestly it is a pity that i am not able to express my appreciation and thankfulness fully because of the lack of my vocabulary, however I am working on it. Btw can you elaborate on the importance of the VAF level and the the impact of the development of ET and I am interested once more in your opinion about Ropeginterferon. And what do you think how likely it is to that ET progresses into a fibrose and what are the determining factors for that. And what do you think about a realistic life expectancy?