My MPN Journey

Hemato-Oncology

Maricruz discovered that she has an Polycythemia vera, a rare form of Myeloproliferative Neoplasms (MPNs) through a yearly medical check-up and blood test.

My coping mechanism? I'm an all-in-or-nothing person, so after the denial phase, I was like: okay, I accept it, I embrace it.

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

Living with a rare disease like an MPN can feel isolating. However, connecting with others can be a great source of support. Maricruz speaks here about her the journey from her Polycythemia vera (PV) diagnosis, to her personal strategies for living with a rare blood cancer, and how she aspires to help others through her experience.

My friends are partying, are having a good time, everyone else is having their perfect life. And I'm here in my room alone because I have this chronic illness. I was like, come on, it's not fair. I'm just 26. Why do I have to go through this?

One day you feel like empowered. I can deal with this, and then the next day it's like, okay, I'm done."

My friends were like: “It doesn't matter if you're up to it or not because you're already helping others. If there's someone that can deal with this, it's you."

How did you find out that you have a rare disease?

"I'm originally from Costa Rica and I was diagnosed with polycythemia vera more or less three years ago. It was by coincidence, I normally do every year a blood test to see that everything's going well. And three years ago, the doctor found out the platelets were higher than normal. So it was a tough process, maybe like to get to the final result to really understand what I was going through."

How did life change for you after your diagnosis?

"I feel like I had one year of denial. I didn't talk about it at all. When someone was trying like to approach it or ask me how I was doing, I was just like: “No, no, I'm okay! I don’t have anything!” And since I didn't know exactly what it was or how to describe it or explain it, I said: “Yeah, it's like some sort of mutation" and...whatever. I was crying a lot. I was calling my boyfriend: “I don't know what's going on.” But I'm not this person, you know, I have always been super optimistic and I love life. I really feel a passion about living life. And I felt I was not living like that just because of the mindset, not really because of my condition or the illness. I really feel like every patient goes through these mixed feelings."

How did your friends react?

"It's funny because somehow my friends, instead of joining this "pity party" and telling me: “Yeah, it's so unfair: you already had a lot to go through.” They were like: “No, no, Mari, your whole life was just preparing you to continue to face challenges.” And I was like: “Oh yeah, well, I want to unsign this contract.” You know, I was not up to this. And they said: “Well, it doesn't matter if you're up to it or not because you're already there and you're already helping others, and find your joy inside this. Because if there's someone that can deal with this, it's you.”"

How do you cope with living with an MPN?

"I try to move a lot, so I try to go to the gym. I really try like to move and stay active. So if I'm not going to the gym, at least I try to walk or get up some stairs. I always try to stay active, like physically with the gym and stuff, but also mentally. So I have a lot of like personal projects and there's always something going on."

I think changing this “why me” to the “what for”, transformed my suffering into purpose, and that changed the whole way I live with my condition.

Honestly, I just thought: I'm going to try to reach some young people dealing with the same condition I have and see if that can help us support each other.

What is the Odd Blood Club?

"I'm a designer, right? And when I did some research about what was going on in my body, I found a lot of science papers and research and some really dense information that it was overwhelming and not clear. And of course, not fun.

So I really thought this "cancer" needs a "rebranding" somehow. And I wanted to target young people. And that's how I came up with the idea of the Odd Blood Club on Instagram. That was my first and my only goal.

Honestly, I just thought: Okay, I'm going to open an account. I'm going to try to reach some young people dealing with the same condition I have and see if that can help us support each other and just feel that you're not alone. And that "not alone" is already something that can help a lot."

Needs. Science. Trust.

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