Saturday, November 26, 2011

More In Common: A Guest Post from Maya at

I asked my friend Maya, a wonderful friend I made during graduate school, who blogs at, to guest post on my blog this month. In addition to having a Masters in Public Health, Maya is a tireless patient advocate, an amazing volunteer for the National Marfan Foundation , a wife, and a mother of two adorable children. Check out her awesomeness! Many thanks to Maya for taking time out from her very busy life to guest post here! 

I was so excited and humbled when Erin asked me to guest post this month!

My name is Maya, and I’m a patient advocate. I have Marfan syndrome, a rare, life-threatening genetic disorder of the connective tissue. I’ve been volunteering with the National Marfan Foundation (NMF) since I was a teenager in various capacities, most recently as coordinator for the teen program and member of the board of directors.

You might be wondering why Erin asked me to guest post during Diabetes Awareness Month, when I don’t have diabetes.  Well, my diagnosis is reason enough to be an advocate, but I’ve got 3 more reasons. My husband, Mark, has Type 1 diabetes, celiac disease, and Aspergers syndrome. Our older son, M, has autism. Our baby, J, has Marfan syndrome like me. Our family is a mixed bag of medical drama.

On the surface, these are very different disorders. They affect different body systems, require different treatments, have different symptoms and different outcomes. It’s easy - too easy - to focus on the differences. Many of us with chronic illness look for people like us, people who can understand the unique predicaments of our own diseases, and cling to them. Erin has asked me to write about the importance of coming together across diagnoses.

This summer I attended a mini-conference for parents of children with special needs. One of the speakers discussed how he believes that disability rights will be the next big civil rights movement in this country, and I agree. The only way that we’ll be successful in our efforts for equal opportunities is to combine resources. Alone our various patient organizations are small, but together we will be a force to be reckoned with.

The conference attendees took this idea and began to run with it. Think about it: at the basic level, we all want the same things. We want to be heard. We want good medical coverage. We want to be accepted--within our families, our workplaces, our communities. And although the specifics of what we want might be different, our basic advocacy efforts overlap. We realized that we have more in common than we’d originally thought, and created the Twitter hashtag #MoreInCommon to keep the conversation going post conference.

Coming together is useful in more ways than just politics, however. As non-profit organizations we can learn so much from each other. Take the JDRF’s Bag of Hope program, for example. What a great way to get newly diagnosed families connected to each other and the organization from the get-go! The NMF is now working on getting information packets into “Marfan clinics” nationwide to achieve the same goal. In turn, we’ve had various rare disease groups contact us about our conference setup because they’d like to adopt a similar format.

So this Diabetes Awareness Month I honor the journey that those of you with diabetes are on. I also invite you to come to the larger table so that we can learn from each other and advocate for a better future for those of us living with a chronic illness.

Thursday, November 24, 2011

Giving Thanks.

I love that Thanksgiving falls during Diabetes Awareness Month.  It gives me a nice nudge to not only reflect on all the usual things I'm grateful for, but to think about all the things involving diabetes that I'm thankful for, too.

Some of the things I'm been thinking about over the last few days are:

  • My family: I'm so grateful to have a family that supports my diabetes efforts! My husband wakes up in the middle of the night with me if I'm low. He never complains that we spend so much of our money on medical costs. He doesn't see me as "sick".  I know not everyone has as supportive of a spouse as I do, and I know how lucky I am to have him.  I'm also grateful for my extended family, and how supportive they are, too! 
  • Modern Medicine: I marvel at this every year. When I think about what it was like to be diabetic even 20 years ago, I feel lucky to be alive now.  As much as I complain about how much things cost, or how things don't work perfectly, I really am grateful for what I do have.
  • Diabetes: Sometimes I sit and fantasize about what my life would be like without diabetes. It would be amazing! But, then I think about all the people I've known and all the things I've learned, and the person I've become because I have diabetes, and I realize that have to be grateful for it, at least in some sense. 

I hope you all are having a wonderful Thanksgiving, and that you're taking the time to think about the things you are grateful for. I know not everyone's life is sunshine and roses all the time, but I do think that every person has at least one thing they can find to be thankful for.

Happy Thanksgiving!

Monday, November 14, 2011

Word Diabetes Day

Today is Word Diabetes Day.  I'm posting this pretty late today-I've been travelling most of the day- but I still wanted to take some time to commemorate what today is about.  World Diabetes Day is about creating awareness about the impact diabetes has on the world.  When we talk about the impact diabetes has on the world, we talk a lot about how many people have diabetes, how many people will get diabetes, the financial burden of diabetes, the human toll of diabetes, etc., etc., etc.  Instead of focusing on all of those things, though, I'd like to take my cue from a friend of mine from diabetes camp, who posted this on her facebook page today:

"I just celebrated 18 years of living with (and not suffering from) this chronic illness. It shapes who I am on a daily basis."

Diabetes certainly has an impact on the world, but it's not always a bad one. I'm a better person because I have diabetes. Like my friend, I believe I am living with (and not suffering from) diabetes. Some days it sucks.  It affects me every day. But it also shapes me every day-into stronger, more understanding, more compassionate person.  So today, I want to celebrate the the lives of all those living with diabetes, I want to honor all those who love and care for people living with diabetes, and want you all to know that diabetes can have a positive impact in the world!

Wednesday, November 9, 2011

Diabetes Awareness Month!

Did you know that November is National Diabetes Awareness Month? Chances are, if you're reading this blog, you already did.  Last year, I blogged every single day about diabetes, to create awareness in my sphere of influence, and to educate people on some of the less understood things about diabetes.  If you want to read those posts, they start here.

This month is just a smidge busier than November last year, so I am not going to be quite as much of a diabetic rock-star.  But, I still want to post some things in honor of this month and in honor of those who live with diabetes, or are affected by diabetes on a daily basis.

Last year, I wrote a lot about the basics of what diabetes was, how it is treated, stuff like that. This year, I want to make my awareness blogging a little more personal. I'm going to be travelling a lot these next few weeks, but I do plan to do a few posts about how diabetes specifically affects me, on a personal level.  I'm not very good at sharing my inner personal thoughts and feelings, but I will try hard to do so, knowing that what really matters with raising diabetes awareness is not that people can quote how many Americans will have diabetes by 2040, or the details of how a pancreas works, but that they will know and understand the impact this disease has on the individual.

So, stick with me, this month, peeps!

And, until my next post, please check out this amazing video where a little girl explains how diabetes affects her, in her own beautiful words!