Is Essential Thrombocytosis an MPN ?

[kitcat49]

I'm still looking to talk to someone else with ET. I also have CLL. I see that ET is on the rare disease list and understand that the two together are even more rare which makes it really hard to find.

[tclementi]

Hi kitcat49 - I'm sorry patients didn't respond to your other post. You might want to try talking to patients on our FB pages, sometimes people are more talkative in the comments section there (main-facebook.com/PatientPower.I...

CLL specific- facebook.com/CLLPatientPower/)

And to answer your question- ET is a type of MPN. Here are some videos that might be helpful: patientpower.info/video/mpn...

patientpower.info/video/wha...

Let me know if this helps! Perhaps we can get you onto our next session of the Patient Cafe for MPNs or CLL so you can talk virtually face-to-face with patients and share your story.

[Jerrymohler]

Hi Kit. How long have you had CLL? How long have you been on Hydroxyurea? I'm in CA, where are you?

[kitcat49 in reply to Jerrymohler]

Alberta,Canada. Just this year,April I think. I am getting some joint pain,hips and jaws. I was diagnosed with cll in 1999.

[RozMarshall]

Hi...I have ET & live in Australia. There are some great FB groups you could join that are very active, informative & friendly. My favourite one is Essential Thrombocythemia Support group, a closed group so privacy is assured. There are people from all over the world with MPNs on it, we share loads of information & give a lot of support as we are scattered far & wide & all have different experiences with these disorders. PatientPower is one of our favourite reference sites & Dr Mesa one of our Heroes.

[kitcat49 in reply to RozMarshall]

Thank you for responding Roz.I'll check those out...Cat