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About five years ago, Bren Cox, 57, knew something strange was going on with her health.
Heres her story, as told to health writer Alice Oglethorpe.
María Medem
But in hindsight, I can see that it all started 15 months before, in late 2019.
Even though Id never been a headache person, around then, I started gettingdebilitating migraines.
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Five years after learning she has PV, Bren feels she can finally live and embrace life again.
Around then, though, I also started havinglower back painand feeling tired all the time.
My symptoms bothered me enough that I brought them up to my doctorsmore than once.
And every time theyd be dismissed as no big deal.
Or they would blame it on COVID-19, which Id gotten pretty severely in 2020.
Then, in May 2021, my health went downhill rapidly.
Things only got worse after that.
My husband drove me to a different ER, where I got blood work and a CT scan.
Thats the first time I heard the words polycythemia vera, or PV.
Even though the doctor told me not to google PV, thats exactly what I did.
I found out that its a rare blood disorder thats actually a kind of cancer.
It affects your bone marrow and causes the body to make too many red blood cells.
The result is blood thats much thicker than it should be.
Headaches are another common PV symptom.
All the blood clots impact circulation, which is why my migraines were so awful.
Everything Id been going through over the past few years finally started to add up.
My blood had become so thick that it impacted my circulation and spiked my pressure.
I was immediately admitted, and I ended up being hospitalized for five days.
Five years after learning she has PV, Bren feels she can finally live and embrace life again.
Thats when I first met with a hematologist.
He tested me for PV, and it turned out thats what I had.
He prescribed a medication to treat it: hydroxyurea.
I actually ended up back in the ER (again!)
because they were so bad.
He was so dismissive.
By this point, I had found some support groups for PV on social media.
Basically, it helps bring blood counts down to a normal range and stops new clots from forming.
In January 2022, I started taking it.
There were some side effects.
And even more importantly, I finally saw improvement.
Im even considered to be in the category of having controlled PV.
Some patients with PV can even end up easing off the medication and could possibly even stop taking it.
Im hoping one day, that could be the case for me.
I am pretty active on Instagram and online PV groups because it can help others learn about the disease.
They later message me and say they found a different doctor and are changing treatment courses.
Information can save lives!
Right now Im working on living again with PV.
Im getting more active and want to get back into yoga soon and start traveling to visit my daughters.
I know its currently incurable, but I cant let this be what ends me.
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