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Bringing Awareness through Rare Disease Day 2017

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Today, February 28, 2017, is Rare Disease Day 2017. I don’t know that it’s necessary to set aside a day to bring awareness to rare diseases, as I think we’re all aware that millions of people suffer from various rare diseases. I am, however, grateful for this day of awareness as I hope it will help shed some light on these mysterious diseases and maybe help the people who suffer from them to feel like they are not alone.

My husband happens to be one of those rare people who suffers from a rare disease. I’ve actually attempted to share a little of his story here on The Birch Cottage blog, but he’s such a private person so I tread cautiously. However, I would love nothing more than to bring tremendous awareness to this disease in hopes of finding a cure!

Rare Disease Day 2017

Rare Disease Day 2017

My husband suffers from a rare disease called Polycythemia Vera (PV). It belongs to a group of diseases called Myeloproliferative Neoplasms (MPNs). So, I feel like since I have a voice here on The Birch Cottage, that I would be remiss if I didn’t do something to help bring awareness to this disease.

Incyte and General Hospital Raise Awareness for Rare Blood Cancers

I was really surprised and pleased (in a weird kind of way – because I wish I wasn’t talking to you about this at all!) to see that Incyte, a drug-discovery and development company, was working with ABC and General Hospital to raise awareness for rare blood cancers. You see, THIS is the rare disease that my husband is all too familiar with! 

When I was a little girl, I can remember my mom watching soap operas, like Dark Shadows (super scary to this little girl), Edge of Night, Days of Our Lives and General Hospital. Fast forward to my late teens and early 20’s and this young mom got hooked on General Hospital when Luke and Laura were finally together and then everything fell apart again. Those episodes were so suspenseful and nerve-wracking!! I’m reliving the emotions as I write it about it now.  Soap operas! Geez….

General Hospital was the only soap opera I ever watched on a regular basis. Even though I don’t watch them now, it’s kind of funny (peculiar) how things from our past come back around. So, here’s this soap opera that I remember my mother watching when I was a little girl and that I watched as a young adult, now bringing awareness to the very rare disease that has so impacted my husband’s life and my family.

You can watch the clip of the episode where Anna (played by Finola Hughes) finds out she’s been diagnosed with the rare disease Polycythemia Vera (PV). The rare thing about this rare disease is that there’s no normal course of progression. As with many rare diseases, there’s also not a cure for PV.

Rare Disease Day 2017

Rare Disease Day – Hope for tomorrow!

In the case of my husband, he is monitored closely by his healthcare professionals and his wife. I like to think I’m his biggest advocate and his voice. My husband suffered a terrible incident on February 17, 2014 that almost cost him his life. I honestly don’t know what would have happened to him if I had not been there to speak for him. We were so fortunate! After he spent what seemed like an eternity in a coma and in a hospital out of state, he not only woke up from that coma and survived, but his recovery has been amazing. He is my walking miracle!

I consider every day we get to spend together a true gift.  I know none of us have a promise of tomorrow, but that promise is even less promising for those who suffer from rare diseases, like PV. I do believe that together, we can make a difference!

Thank you for stopping by today and giving me an opportunity to raise awareness for rare diseases on Rare Disease Day 2017. This truly is a topic that touches home here at The Birch Cottage.

Til next time…

Pam from The Birch Cottage


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