Questions & Answers

Is Anyone Taking Part In The Rusfertide Trial And How Has It Been For You; Any Side Effects?

What's The Latest On A Vaccine For Cal-r Myelofibrosis Patients?

How Often Does Essential Thrombocythemia Becomes PV Or MF?

What Treatments Have You Done That Have Shrunk Your Spleen?

Has Anyone With Primary Myelofibrosis With Jax2 Mutation Experience Difficulties When Flying? I

I am concerned as I am at risk for heart attack or stroke due to above diagnosis. Thank you

I Have Been On Jakafi For 5 Months But Itching Remains A Problem. Any Suggestions?

Anyone Else Out There With PV Getting Treated With (Beseremi) ?

What side effects are you experiencing, and how do you handle them?

Do Any Of The Louisville Area People Attend GILDA'S CLUBHOUSE In Louisville?

A Year Ago I Was Diagnosed With Et, How Often Does It Become Pv Or Mf? And After How Long?

Does Anyone Have Schwannomatosis NF3, I Have Had It For Over 50 Years, Just Someone To Swap Symptoms Compare Effects, History Of?

Maybe even make breakthroughs in the treatment of this? I have a personal specialist for this condition, it was finally diagnosed in 2017, by a neurologist subsequently now my specialist! I have noticed a few effects, not really listed in accepted lines of Schwannomatosis NF3 symptoms! I also have Juvenile Myoclonic epilepsy, which 'started' the same time as symptoms of NF3, could they be indirectly related? They both started in 1970, when I was aged 14, I am now aged 66, male, and retired!