Welcome to Women Who Empower, the new monthly series here at Live and Love Out Loud that celebrates women who use their online presence to empower others. The Women Who Empower series was born out of a desire to use my blog for more than just a few good laughs. I want to make a difference, effect some kind of change in our world and I want to support, encourage and celebrate women.

Everyday women like Maya.

Maya is not your average wife and mother. She’s a genuinely kind, extremely intelligent and down-right determined woman. And with her husband Mark and their 2 boys – M and Baby J – by her side, Maya is a force to be reckoned with.

Armed with a Masters in Public Health, Maya encourages others to empower themselves by playing a more active role in their health care; encouraging them to ask questions, search for answers and most of all partner with their physicians. Her passion for educating others about Marfan syndrome – the genetic disorder she was diagnosed with at the age of 8 – and the resilience and strength in which she navigates the obstacles and stumbling blocks in her life is unbelievably inspiring. That Maya chooses to celebrate life despite the challenges of Marfan syndrome and the chronic illnesses her husband and sons live with as well, is beyond amazing.

Between nursing an infant and wrangling an active toddler, Maya volunteers her time with the National Marfan Foundation, tweets up a storm on Twitter and shares her unique journey through motherhood over at her blog Musings of a Marfan Mom.

Here’s what Maya had to say about celebrating life in the face of a life-threatening genetic disorder and empowering others to play an active role in their health care:

At Musings of a Marfan Mom, you blog about your personal experience with Marfan syndrome and how it affects your life as a wife and mother. While having Marfan does not define you, how has it shaped you into the woman you are today?

I was diagnosed with Marfan when I was 8 years old. The kids at school teased me because I was so thin and gangly and unable to participate in many physical activities. My parents were overprotective, as though I was some kind of ticking time bomb. By the time I was a pre-teen I was bitter and rebellious. Then, I met a girl my age with Marfan who changed my entire outlook. She’d had many more hardships from the syndrome than I, but she was happy and loved to serve others. We became fast friends, and then she died suddenly of an aortic dissection. I was devastated, but quickly decided that I would honor her by teaching others about Marfan.

Although I was shy, I forced myself to become a public speaker so that I could spread the word. I educated myself and changed my attitude. Each experience I had resulted in something positive that spurred me on to the next activity – I found a true joy in trying to help other people and in the process also became more accepting of having Marfan myself. I’d like to think that I’ve become more compassionate as a result of the physical trials I’ve dealt with so far. While some doors have closed to me as a result of having a life-threatening genetic disorder, I celebrate the life that I live now. I discovered interests in music, advocacy and public health and met some of the most amazing people. It’s taken a long time, but I now honestly view Marfan as more of a blessing than a curse, and I wouldn’t take it away even if I had the chance.

Every member of your family is living with a chronic illness of some sort. Your husband has Type One Diabetes, Asperger’s syndrome and Celiac disease; last year, M was diagnosed with Autism; you’re living with Marfan syndrome and just recently Baby J was diagnosed as having Marfan as well. From the outside looking in I’m completely overwhelmed, not only by your circumstances, but by the grace in which you continue to live through those circumstances. Your drive, determination and resilience are inspiring and I can’t help but wonder, where does this strength come from?

I don’t know if it’s really strength as much as just doing what needs to be done, haha. I have been lucky though. I grew up in a house where my parents encouraged me to take control of my medical care and connect with other “Marfs”. My siblings and I were taught to mourn, but not to wallow in self-pity. I have a deep faith that there’s a plan for each of us and that no matter how bad things get, they will get better and we’ll be able to find something useful from our trials. My husband and I make a point of trying to find the good whenever something bad happens, though it’s still not always easy to do. On days when it all seems too overwhelming, I draw on strength from other women: members of the “Marfamily” or my twitter friends, for instance. Creating communities of other women is empowering. There, we can lean on each other, share knowledge, and help each other discover the inner strength we didn’t know we had.

Many people complacently take a backseat role when it comes to their health care – trusting that their physicians are making the best decisions – yet you’ve taken a more empowered and informed role and I find it to be incredibly inspiring. Was living with Marfan syndrome the catalyst for your drive to become more empowered and informed? And how can we play a more active role in our health care as well?

When my friend died, it scared me. I hadn’t been taking my diagnosis seriously, and that was a wake-up call to me that I couldn’t be so passive about my health anymore. I relied on trial and error to figure out how to navigate the health care system, although my Masters in Public Health has certainly helped. The more work I’ve done with patient advocacy, the more I see a need for people to step into the driver’s seat, especially patients with a chronic illness.

In order to play a more active role, we first need to understand that we have a responsibility for our own health. Physicians see a new patient every few minutes all day long and they don’t know our bodies like we do. We should be preparing for appointments, researching our condition, and asking questions: particularly why questions (why do I need this medication, why am I having pain, why did you select this treatment plan, etc.) . I know in America we’ve been conditioned to believe that doctors are the ultimate authority in medicine, but research shows we’re much healthier when we treat the doctor/patient relationship as a partnership instead.

How do you personally define the term “empowering women”?

Empowering women is all about helping each other discover and hone our passions and talents, and using them to problem solve. When we’re able to do this, we realize that we’re able to make an impact on our lives and the world around us. We also need to become knowledgeable about the things that matter in our lives (our kids, education, etc.) so that we can be proactive in our decision making, as opposed to being dependent on others for our decisions. I don’t think we as women today give ourselves enough credit, but we’re pretty darn awesome!

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Maya is an amazing woman, one that I’m so proud to call “friend”. Do you have an empowering woman in mind for the Women Who Empower series? I’d love to hear from you. Click on over to the Women Who Empower page and tell me all about her! And if you’d like to learn more about the women who were featured in the Women Who Empower series in the past, just click on over.

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