A Moving Video Account of Jane’s Pre-diagnosis MPN Medical Mishaps
After listening to Jane’s video presentation, I was deeply moved by her story and asked if I could post it, along with her comments from an online forum. Thankfully, she accepted the post invite graciously and without hesitation. She presented at the MPN Awareness day on September 12th, 2013 in Atlanta, GA. Without further ado, here is the video:
of the “Lessons Learned”
- Be your own advocate
- Look at your test results
- Question your doctors
- Ask intelligent questions
- Be informed
- Make sure you read the latest information from MPN Specialists
- Be active and connect to an online support group (see Facebook Groups)
Her Narrative from an online forum (with permissible edits):
“Thanks to everyone for all your kind comments! I was really touched that I made some of you cry ( although I make my husband cry every time he gets the Visa bill). Public speaking doesn’t make me nervous, I was just afraid to bore people with my story. But it’s not boring when you can relate I guess.
I know now I don’t have both ET and PV. That’s what my regular hemo said so that’s why I mentioned it. During a break in the program I spoke to Dr. Winton and he said I don’t have both although I most likely did have ET and it morphed in PV. He said I didn’t have MF either because a “1” level in fibrosis is not enough to constitute MF.
During the break a MPN researcher asked me to put my name on a list to support the start up of a study to research familial connection in MPN’s. I said yes and I can garner support from those of you who have relatives with blood disorders. When she asks I’ll shout out to you! I said those last few words (Everyone you meet is fighting a battle you know nothing about so be kind) because this disease not only told me why I was feeling so bad but truly made me more aware of other people’s woes.”
If any of our readers would like to submit your story, either written or video, please drop me a note. I am very interested in exploring the progression of medical mishaps that lead to an MPN diagnosis. Together we CAN make a difference!