Essential Thrombocythemia: Looking for information and support

I don't think anyone is telling people not to travel, just to take their meds and, if they're are over 60, have JAK2, and or a history of clots, to wear compression hose and stay hydrated.

Best wishes for your travels!

That is very encouraging ❤️
Thank you

At 73, I've been traveling world wide since ET diagnosis some 20 years ago...I do wear compression stockings when flying long distances (anything over 2.5 hours). Stay hydrated, walk around. I'll be diving in Belize in August, then hope to hike with my daughter in Panama!

I've been flying frequently but trying to keep flight time under 5 hours (so connecting flights mostly). Told to get up and walk around as much as possible, stay hydrated, put meds in carry-on, compression socks (but I don't wear them--too confining). I am 72 yo. "YOLO" (you only live once -- so live your best life and try not to let this inconveinient disorder get in your way!). With Aloha, jd

Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey started with a routine CBC. Not sure what I need right now other than a supportive community. Would love to hear from anyone who can offer that.

Welcome, @as86. when getting a new diagnosis, it can be hard to even know what questions to ask. You've certainly come to the right place to find a supportive community. To get you started, I moved your post to thsi existing discussion:
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
I did this so you can read previous comments and connect with helpful and kind members like @nohrt4me @1995victoria @nyjean @preacherswife1977 to name just a few.

As you have more questions, you can use the group search to find more discussions related to ET : https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential%20thrombocythemia&index=discussions

Have you been referred to a hematologist?

Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being treated and monitored by a competent hematologist, b) you follow advice and the treatment works without side effects, and c) you develop no co-morbidities.

Thrilled for those who feel great. But that isn't everyone's story, especially for those who have med side effects, more severe fatigue or frequent migraines, enlarged spleen, or co- morbidities. No one should feel they're a slacker if they need to slow down a bit.

I'm 70, CALR+ x 15 years, well-controlled on meds x 6 years. Looking at mitral valve repair, severe scoliosis. I feel pretty good, but I have to pace myself.

79 CALR + for 3 months and improving with meds so far. Lab update today...Had not had a CBC for more than 4 years...then this popped up with move and new PCP. I was shocked and very anxious , felt let down by my body. In retrospect can id subtle symptoms and a feeling something "had changed....something wrong" during extended intense stressful caregiving for my late husband. Adjusting to meds .....noting some intense fatigue at times, but relieved with rest. Learning that dosing and meds is more of an art and balancing act than just science. Feel lucky I have a PCP who knew to refer to specialist and getting a hematologist I feel I can trust.

You didn't even know ET was possible until you were diagnosed, right? Among your acquaintances, you may not find anyone who's aware of this condition.

But here, you're among friends. Someone will weigh in on just about any question or concern you may have.

Ask away!

I have posted many times on this site. A shortened personal history. 21 years with ET (triple negative). On hydrea for 10 years (since age 60). Doing well so far. I am now posing a question to the community or the "connect director". I have read elsewhere that ET is more prevalent in people with Ehlers-Danlos Syndrome (loose joints and scoliosis among other telltale signs). Does anyone know any more about this? Just curious .