Saturday, January 10, 2009

Meningioma on My Mind...


No this isn’t a Willie Nelson reprisal of “Always on My Mind” but it could be. Rather it’s an ode to an issue that is very dear to my heart and literally on my mind every day.

Nine years ago, I was on a mission to find out why I couldn’t become pregnant and have the children I so desperately wanted. Instead, at age 32 I was diagnosed with a baseball-size brain tumor called a meningioma and underwent life saving surgery eight days later.
Meningiomas are the most prevalent primary brain tumor and of those diagnosed, 65% are women.


Many misconceptions surround meningiomas, one of them being that they are harmless because 90 percent are classified as benign. In reality, they are often far from it, even deadly. Benign tumors can cause permanent disabilities and be life-threatening. Meningiomas have a 15 to 20 percent reoccurrence rate so survivors must be monitored for the rest of their lives and live with the fear that they may come back.

Preliminary research has indicated that meningiomas could be hormonally fuelled. I was constantly told it was all in my head, I’m female, hormonal, stressed out— the modern woman’s plague! They are also slow growing so as a result of all these factors many meningiomas are misdiagnosed, especially as some of the symptoms can be attributed to menopause, or are not detected until they start causing serious deficits or even kill.

When I was diagnosed I felt alone, isolated and frightened. I knew of no one who had survived a brain tumor let alone a meningioma. Those feelings were aggravated by the fact that they are often discounted by those in the medical profession and I was told I had the “good” brain tumor. Who knew I was this lucky. As far as I’m concerned, there is nothing good about any growth in your head!
I longed to connect with others who would understand how I felt. Rather than lament the fact there was no real support out there for meningioma sufferers and wanting to prevent others from feeling the same helplessness and fear I had, I created my own non-profit organization called Meningioma Mommas. We are a 24/7 online support group for all those affected by meningiomas. Today we have over 3,800 members worldwide with a handful of new members joining every day.

Providing a safe haven for people suffering from this devastating disease isn’t enough for me. I am deeply committed to raising money for meningioma specific research and hope to raise one million dollars in my lifetime. We’ve already raised $145,000 towards my goal.

My ultimate goal is to put meningioma on the awareness map and to eradicate this disease head on.

And Willie if you’re interested, “Meningioma on My Mind” does have a nice ring to it.

5 comments:

  1. Hi Liz,
    Came to know this blog through google alerts. The word meningioma struck a cord with me because I am a 10-year meningioma survivor. You are right although deemed 'benign' which is supposed to be 'good', there is risk of recurrence which can lead to chronic illness such as epilepsy and disability. Look forward to read more of your writing.

    URL: http://www.jackie-nak.blogspot.com

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  2. Gosh I am in the thick of it right now. I am bewildered and terrified. I started a blog: http://mymeningiomastory.blogspot.com/

    I look forward to meeting you one day. I am going to check out Meningioma Mommas bc I feel so alone. I have great family support but no one really knows what I am going through. It's just God and I; and of course anyone else with a giant meningioma diagnosis.

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  3. While I'm not your average Meningioma survivor, I don't know how much longer I can go without Treatment!! Due to the terrible headaches, daily seizures, and blockage of flow of nutrition through my brain caused by this rare disease I have lost my house, job, cars, spouse, daughter, and to top it all off I just lost the one person who was really being there for me as I always had her; my mother died of Lung Cancer this passed December!! I'm devastated and afraid this social security wait is going to be the Death of me!! I am terrible afraid and have so much I've yet to accomplish due to this frightening and Rare Disease that no-one seems to Understand. It's been the worse 3 years of my life. I was trying not to file for disability just because it's been very hard for me to accept but after be advised time and time again by Dr's to do so I'm now praying I'll get approved before I Die:(:(:(. I will keep you updated and appreciate your story it's been very inspiring and gives me hope for change, a better life, and wouldn't it be a miracle if you discovered the cure!! If I can get treatment before it's to late and get back to work I promise to start my own fund raising project and contribute all money I raise to Your Foundation I think your Awesome and feel blessed to have discovered someone with your insight to this RARE disease!! Peace & Love to Liz and the Meningioma Mama's :-)!!

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  4. This is very good information.i think it's useful advice. really nice blog. keep it up!!!

    meningioma

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  5. Thanks for sharing! The most common type of primary brain tumor is the meningioma, a noncancerous tumor that arises from the abnormal growth of the cells that form the delicate outer covering of the brain, called the meninges.

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