MPN "specialists" and support groups

Things you hear about MPN "specialists" and other ET-related
issues on social media (including this blog) are usually things
you need to learn more about and discuss with your doctor. 

If you follow online support groups for people with ET or MPNs generally, you'll eventually encounter people who urge everyone to see an MPN specialist. Often, when people complain about their doctors, the first question others will ask is, "Is he/she an MPN specialist?"

I've been following these conversations for over a year, and I think we need to understand that there is no such thing as an MPN "specialist," and that things we hear in support groups (or on this blog that you're reading right now) are things we need to learn more about.

Chronic cancer in the workplace

ET fatigue and other symptoms can create problems for
workers with chronic diseases.

How many people reading here have quit working, taken early retirement, changed to less stressful jobs, or cut back work hours due to ET? I've done All of The Above. And I'm not aone.

The MPN Research Foundation shared a story from the Minneapolis Star Tribune about the plight of acute cancer patients for whom Americans with Disabilities Act protections are inadequate. The story touches on the complex problems cancer treatment poses for workers and employers: Some workers come out of cancer treatment unable to do their jobs, some workers need more than the 12 weeks of unpaid leave the ADA offers, and some patients are fired at the end of their leave period, losing their health care insurance. This can be financially disastrous for patients who want to work, but it's also difficult for employers who have obligations to meet, and have to hire interim help or train new employees.

Working is even more complicated for chronic cancer patients like those of us who have ET, especially younger ones. Federal work leave requirements allows us to take time off to get used to a new chemo or medication. (I took a week off work when I started hydroxyurea. Even though I was only working part-time by then, my employer was very supportive.)