Asha's MPN Story
Like some people living with a rare blood cancer, Asha said she felt fine. In reality, she was hiding the truth about how her myeloproliferative neoplasm (MPN) really affected her quality of life. Finally, Asha decided to speak up and spell it out, because fine is not enough for her journey with polycythemia vera (PV). Hear why Asha now talks more openly with Healthcare Professionals about her PV symptoms.
(Asha) I do tell people I'm fine all the time, even though I'm really not….
(onscreen text) THERE ARE 2 SIDES TO EVERY MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…
(onscreen text) FEARFUL OF BEING A BURDEN
INSIDE I WAS STRUGGLING
NERVOUS TO SPEAK UP
EASIER TO STAY SILENT
(onscreen text) ASHA Diagnosed With Polycythemia Vera (PV) in 2012
(Asha) “When I was diagnosed…I didn't really deal with it…I would ignore my doctor's appointments. I would just kind of like, “Oh, I'm okay…like I'm fine.”
…I didn't want to say anything to anyone…. I just wanted to understand first what it was before I told other people…I didn't want people to, you know, make fun of me or, or see me in any different way than they already have seen me prior….
(onscreen text) MICHAEL Asha’s Father
(Michael) …society can be cruel. And I think my daughter knows that, so she doesn't want to release too much of a weakness, kind of thing, you know?
(Asha) I'm not very trusting…I open up in doses about what I have….
(Michael) She does a good job of hiding that, how she feels …I can tell you this, she's not as forthcoming in sharing her condition….
(Asha) …it has to do with the burdening thing. You don't really want to burden anyone like with a heavy conversation.
I don't think that my family and friends know to the extent of what I go through because I try to conceal it.
…A lot of the times I may be walking down the street and I may look fine, but I may have like an enlarged spleen or I may have like something that's really painful inside of me…I’m dealing with something…So I think that's the hardest part is balancing that, oh, I look okay…but sometimes I'm not okay.
…the most recent symptom is night sweats… coupled with weight loss…. Those symptoms were really alarming to me because I’d never experienced it before and I knew that it was a part of PV.
(Michael) …I would say, well…“So how's my daughter doing?” “I'm fine. I'm fine, dad.” And that tone of her voice lets me know if she's fine or not….
(onscreen text) FINE IS NOT ENOUGH
(Asha) There's a lot of downsides to keeping things to yourself because, if you're not able to express and talk about what's bothering you, then it's hard for people to help.
(Michael) …We've come to a point now where, if she's not fine, she will tell me…she's a lot more forthcoming now with details….
(Asha) …that's one of the things that I've learned is that I have to be more vocal… and it won't come off as weakness…if anything, it will make me stronger
(onscreen text) SHARING THE IMPACT OF YOUR MPN MAY HELP YOU GET THE SUPPORT YOU NEED.
…I would tell my doctors and nurses, you know, I'm, I'm okay. You know, I'm fine. And then I would have symptoms later on…I've learned that, especially with your physicians, that's a big no-no, because they're the main people that can help.
…making sure that you're fully, or as transparent as you possibly can be with your physicians is key…they're the ones that are going to be there with you every step of the way with this diagnosis.
…they just really want to understand what's going on with me so they can, you know, best solve it in the way that they can...
…so for that reason, I don't, I don't really hold anything back …I just want to feel better anyway, so I'm just willing to tell it all.
(onscreen text) SPEAK UP AND SPELL OUT HOW YOUR MPN AFFECTS YOU.
…living with an MPN and sharing your experience is extremely important…
…I’ve had a lot of highs and lows dealing with this. I’ve had a lot of crying nights. I’ve had a lot questioning, “why me?”…so to come to this space…I feel encouraged to spread the awareness.…
…This is a long game…so…never tell them you're fine when you're not really fine. And you’ll be light years ahead of me when I first got diagnosed.
(onscreen text) FINE IS NOT ENOUGH
(onscreen text) UNDERSTAND WHY FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY.
(onscreen text) Learn more at FineIsNotEnough.com
(onscreen text) This video is sponsored by Incyte Corporation.
(onscreen text) © 2021, Incyte Corporation. MAT-HEM-02326 09/21