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Mar. 4, 2014

TOPIC: Patients & Members

Adventures of an Advocate: Annette De Bow’s Big Journeys

Posted by Annette De Bow

Six months after her daughter Evan Claire was born in 2008, Annette De Bow, 48, of Davis, CA was diagnosed with polycythemia vera (PV), one of a closely related group of rare and progressive blood cancers called myeloproliferative neoplasms (MPNs).  Feeling alone and shell-shocked, she turned inward and felt a terrible sense of isolation knowing that she had a rare condition that few others could relate to.”

But Annette eventually found support through the MPN Research Foundation, one of NORD’s more than 200 member organizations. When she discovered how little money was available for MPN research and patient support, she found her voice. Combining her passion for outdoor adventure with her desire to make a difference, Annette started Treks for a Cure and has now backpacked twice across the High Sierras on month-long hikes which, combined, have raised nearly $60,000 for MPN research.

Read Annette’s personal story about what it’s like to live with a rare disease and why being an MPN advocate has been such an incredibly rewarding journey for her.

After my daughter Evan was born, I couldn’t understand why anyone would ever want to go through more than one pregnancy.  I was so fatigued I couldn’t walk up a flight of stairs. I had a constant ringing in my ears, dizziness and visual disturbances. I weighed considerably less than before I was pregnant.

At the time, I thought these symptoms were not unusual for a sleep-deprived new mother. Then I took Evan in for her six-month check-up. She was fine, but our family doctor noticed how thin and pale I looked and ordered a blood test. After more tests, I was diagnosed with polycythemia vera (PV), one of three closely related rare blood cancers called myeloproliferative neoplasms (MPNs).  The other two MPNs are essential thrombocythemia (ET) and myelofibrosis (MF).

My husband and I were shocked. My family who saw me as, “the healthy one who takes care of herself” was also surprised. One of the first things I did after my diagnosis was to research and learn everything I could about PV and MPNs. I soon learned that MPNs can strike anyone regardless of age and that fatigue is the most common symptom. MPNs have no cure and their causes and risk factors are not known.

Through my quest for information, I found the MPN Research Foundation, whose purpose is to stimulate research to develop new treatments, and eventually a cure, for MPNs. But it’s also a community where people with MPNs can learn about living with a rare disorder and share their experiences. . It offers these patients helpful  information, a connection to others like them — and hope.

That was  important for me, because initially I felt so  isolated. My joy in being a new parent was dampened by my grief. The first year was a blur of doctor visits and phlebotomies, which I had every few weeks when my red blood cell counts were too high. I remember how scary it was when I went to a cancer center for the first time. In early 2010, I started on a medication called hydroxyurea, which is a type of chemotherapy. I like to think of it as “chemotherapy light.” I still take it every day and fortunately do not experience many side effects.

Once the shock wore off and my disease became more manageable, I realized that if I wanted to help myself and others in the MPN community I had to reach out.  This was hard, because when you have a rare disease, you’re inclined to turn inward, to distance yourself. But I knew that the best way for me to combat this deadly disease was to raise money for the MPN Research Foundation. Since MPNs and other rare disorders are considered orphan diseases, they do not attract the research dollars they need. If I didn’t do something about this, who would?

So I decided to organize my first Trek for a Cure in the summer of 2010. I’m an avid backpacker, so I fulfilled one of my lifelong dreams by taking a month-long, 240-mile hike of the John Muir Trail through the High Sierras. I hesitated before pushing the button to publish my website, not sure if I wanted to share my “secret” with the world. Then, when I  did it, I remember thinking, “There. It’s out there. This is the disease I have. Let’s find a way to cure it and help people manage it.”

The support was simply incredible! Friends, family and supporters joined me for several days or a week at different points along the trail. So did Audrey Hicks, another patient with PV who flew in from Canada. We received donations from patients and families from all over the world. By the time I reached the summit of Mount Whitney, we had raised $30,000.

Last summer, I did my second 200-mile trek in the High Sierras, which to me is the most gorgeous place in the world. We again raised almost $30,000, which is all being used to directly fund research in cooperation with the MPN Research Foundation.

2 Responses to “Adventures of an Advocate: Annette De Bow’s Big Journeys”

  1. Mary Leader says:

    Your story is very inspiring. I was recently diagnosed with P.V. and am still trying to process everything that is happening . I am 65 years old, very active and until now I have been fortunate enough to have been very healthy. I will continue to read Nord Blog and seek inspiration as I continue this journey.

  2. Christina St. John says:

    I agree this was an excellent story. I am newly 64, diagnosed in 2011 with Cryptogenic Liver Cirrhosis from unknown causes. I was relieved no other diseases or cancers were impacting my liver, still we had no answers and I tested negative to everything.
    While going through intensive blood workups, etc. for acceptance into UCLA’s Transplant program, the Liver Panel had questions that escalated me to another level of blood work up and more tests. I was finally diagnosed with Polycythemia, under the header of Myeloproliferative Disorder. One of my most painful symptoms is, hands, fingers & tips, feet & toes turn red, inflame, creating a burning & throbbing heat that is so painful it brings tears to my eyes. I see my local Hematologist-Oncologist in March, so I have no idea where I’m going to end up or how my pain will be managed. I know it will be tricky due to my liver. I was just accepted into the Transplant Program so I know they must believe it’s all somehow manageable, so I try to remain optimistic.
    It’s been extremely important to me to support more research for liver disease as well as other rare disorders as many suffer with sometimes few answers or cures. Faith does sustain me, while I pray, what I report or where I get involved will at least aid others even if there’s no time left to aid my conditions.

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