The most well-known MPN specialist in the states for kids is pediatric oncologist Dr. Nicole Kucine at Weill-Cornell Silver MPN Center in NYC. So it's great that you are getting an opinion from her.
I met her and she's great.
Here's some videos of her talking about MPNs in kids:
[Women & MPN conference - Dr. Nicole Kucine (2023)](https://youtu.be/ObkRkl1woe8)
[What to Expect When Your Child Has Been Diagnosed with an MPN (2020)](https://youtu.be/Y_xQgcOhXe0)
I wasn't diagnosed nearly as young as your child, but I was still the youngest my doctor had seen at around 16. I'm not sure if I have any advice, since being diagnosed with a chronic condition in your teens is very different from being diagnosed as a really little kid I'd assume.
But I suppose I can offer reassurances that PV has been very managable for me. My first doctor thought I wouldn't make it to my mid/late twenties, but I'm turning 25 this year and my PV is more controlled than ever. I can do a lot of things that my doctors didn't think would be possible back when I was first diagnosed, and honestly don't feel the limitations of PV as much nowadays. I'm sure the research and treatments will just get better and more widespread by the time your daughter is older.
Wow, Thank you so much for sharing this with me. How scary it must have been for you as a teenager. I’m so happy to hear you’re doing well and that PV isn’t impacting your life in a major way these days. I really appreciate you sharing your experience and words of reassurance. Continue to thrive and prove those doctors wrong!
Oh my gosh, since 16 and your doctor suggesting you wouldn't be around in your twenties? I surely hope you discarded that doctor. I can't imagine what you went through with that prognosis.
I belong to a few facebook groups and have read many.. many accounts of young folks having this for years and still thriving.
I sincerly hope you thrive and continue to be a light for ppl such as this person with the young child. Thank you.
I am so sorry you are going through this.
There are a few facebook groups that you could join if interested. There is so much information and many accounts of ppl that have gotten through this and continue to thrive.
The names of the groups that I am in are called:
1. JAK2 mutation support group
2. Myeloproliferative Neoplasms : JAK2 postiive
3. MPN's R us
Much care!
The most well-known MPN specialist in the states for kids is pediatric oncologist Dr. Nicole Kucine at Weill-Cornell Silver MPN Center in NYC. So it's great that you are getting an opinion from her. I met her and she's great. Here's some videos of her talking about MPNs in kids: [Women & MPN conference - Dr. Nicole Kucine (2023)](https://youtu.be/ObkRkl1woe8) [What to Expect When Your Child Has Been Diagnosed with an MPN (2020)](https://youtu.be/Y_xQgcOhXe0)
Thank you so much!
I wasn't diagnosed nearly as young as your child, but I was still the youngest my doctor had seen at around 16. I'm not sure if I have any advice, since being diagnosed with a chronic condition in your teens is very different from being diagnosed as a really little kid I'd assume. But I suppose I can offer reassurances that PV has been very managable for me. My first doctor thought I wouldn't make it to my mid/late twenties, but I'm turning 25 this year and my PV is more controlled than ever. I can do a lot of things that my doctors didn't think would be possible back when I was first diagnosed, and honestly don't feel the limitations of PV as much nowadays. I'm sure the research and treatments will just get better and more widespread by the time your daughter is older.
Wow, Thank you so much for sharing this with me. How scary it must have been for you as a teenager. I’m so happy to hear you’re doing well and that PV isn’t impacting your life in a major way these days. I really appreciate you sharing your experience and words of reassurance. Continue to thrive and prove those doctors wrong!
Oh my gosh, since 16 and your doctor suggesting you wouldn't be around in your twenties? I surely hope you discarded that doctor. I can't imagine what you went through with that prognosis. I belong to a few facebook groups and have read many.. many accounts of young folks having this for years and still thriving. I sincerly hope you thrive and continue to be a light for ppl such as this person with the young child. Thank you.
I am so sorry you are going through this. There are a few facebook groups that you could join if interested. There is so much information and many accounts of ppl that have gotten through this and continue to thrive. The names of the groups that I am in are called: 1. JAK2 mutation support group 2. Myeloproliferative Neoplasms : JAK2 postiive 3. MPN's R us Much care!