My Life with PV

Hemato-Oncology

Ulrich was diagnosed Polycythemia vera, a rare form of Myeloproliferative Neoplasms (MPNs) after his primary physician noticed a raised platelet count.

My entire perception of the disease changed when I gained control of my illness and made myself the manager of my own disease.

Myeloproliferative Neoplasms (MPNs) are a group of chronic, rare diseases of the blood-forming cells in the bone marrow, which are considered blood cancers.

Ulrich Hufnagel from Heilbronn, Germany, worked as a nurse for 30 years and is now retired. He reflects here about his journey to understand his rare and complex illness and the importance of becoming the "manager of his own disease".

When I heard the diagnosis of PV, I had no idea what it was. I was faced with lots of questions, uncertainty, and fear: what is the prognosis of this illness, what are its effects overall?

How has your illness affected your daily life and activities?

In the past, I could easily run for 7 miles or more. Nowadays, however, I’ve become so short-winded that I’m not able to run such distances anymore."

How were you diagnosed with polycythemia vera (PV)?

"I discovered that I was suffering from polycythemia vera in March 2019, really only by chance. I had an allergy to salicylate and needed to take a tablet every day. I then stopped taking it because of dental surgery and noticed that I didn’t feel so well. I collapsed several times, so I went to see my GP. He diagnosed a raised platelet count and I was sent to a hematologist."

How do you see your life with PV now?

"Polycythemia vera is a rare blood cancer that involves the bone marrow. You can describe it as follows: the switch is always set to “on” and there is an uncontrolled production of blood cells.

For me, PV isn’t a one-way street, but more the start of a new journey. And as is the case when travelling, you don’t just learn about new places. I’ve also learned a lot about myself. What used to stress me out or annoy me is no longer so important. Today I go through life with greater awareness and can now say I really live a lot more in the present. There is life with PV."

I’ve got all sorts of plans in mind: first and foremost, travelling more. This has been one of my biggest wishes, something I’ve always missed out on. I’ve always thought travelling to new places is an education in itself.

Needs. Science. Trust.

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