Musings of a Marfan Mom

Learning from Each Other

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I’m excited to have my friend Erin guest posting today. Erin and I met in graduate school. She is very active in the Type 1 diabetes community and was a big help when Mark was diagnosed with it. Erin blogs over at The Insulin Crowd. Please head on over and say hello, especially since November is Diabetes Awareness Month!

Hello Marfmom.com readers! I was excited and honored that Maya asked me to guest post on her blog this month. In all honesty, I’m nervous! I read her blog, and the comments from all you readers regularly, so I know what an amazing group of people you are! I hope that I can say something here that will be worth the time you take to read it.

Maya has given me virtually free reign over what I should write about, so I think I’ll stick to what I know (and hopefully a little of what you all know, too). I have Type 1 diabetes. I’ve had it since I was 11 years old, and without getting into too many boring specifics about what that all entails, it means I’m a life-long member of the exclusive chronic illness club, along with Stacey from the Babysitters Club, Wilfred Brimley, B.B. King and Brett Michaels. And Joe Jonas. But that’s a post for another day. I digress.

From the little I know about Marfan syndrome that I’ve gleaned from knowing Maya and reading her blog, Marfs (am I allowed to use that word, or do I have to be a Marf to do so? hopefully I haven’t offended anyone . . .) are members of this chronic illness club, too. So, I thought I’d commiserate here a little about this club of ours. Specifically, I want to talk about how reading about you all has illuminated my own journey through life with a chronic illness. There are a lot of things that you all do that have allowed me to see myself and what I do more clearly.I feel like reading about you all, even though we have distinctly different chronic conditions, has made me better understand and relate to my own.

Doctors & Patients
One of the things that has impressed me so much is how much it seems physicians and patients in the Marfan community work together. I was so impressed when I first read about your NMF conference and the physicians that are a part of that group. It seems, at least from an outsiders perspective, that they are so invested in you all. And the fact that at your conference there is a clinic that you can attend was very impressive to me. If there’s one thing I would wish for the diabetes community (other than a cure, of course), it would be that the physicians would work with us and not just tell us what we should and shouldn’t do. Now, I’m sure not everything in your Marf-world is all butterflies and roses all the time, but I do think my Dia-world could take a few lessons on doctor-patient interaction from you all.

Advocacy
I love reading Maya’s posts about the NMF Conference you have every year. And while I know that not every single person with Marfan syndrome is attending the conference, or maybe even knows about it, I think it is amazing that you have something like this. We have a few things like this in the diabetes world, too. We have the American Diabetes Association (ADA) and the Juvenile Diabetes Research Foundation (JDRF-they specifically focus on Type 1 diabetes). I think they both have some kind of annual conference, although interestingly enough, I don’t think they’re as patient-oriented, but more like conferences for researchers, physicians and pharmaceutical companies. I know that there is a “Children with Diabetes” Conference that goes on every year at Disney World, or some place equally as fun, that is much more patient-oriented. Aren’t these kind of events amazing? I think the diabetes patient community is starting, ever-so-slowly, to come to the table at these kinds of conferences and demand a voice. And I love that that is happening. And I love seeing that happen at your NMF conference.

Community
I reach out to members of the diabetes community, via the internet, all the time. If there’s one thing we PWDs (persons with diabetes) are doing really well these days, it’s creating a few on-line hubs for a place to connect with other PWDs. There is a great website called tudiabetes.org that is basically like Facebook for diabetics, only instead of passing around annoying internet memes, you can ask questions of your fellow PWDs and get amazing advice. There are several other sites like this floating around out there in cyberspace, and they are a treasure trove of helpful information. I hadn’t realized how much I actually rely on these sites until I read some of the comments here at Marfmom.com, and Maya’s tweets. I see you reaching out to each other for support and advice (I especially love when Maya updates about a sale on tall jeans), and it makes me realize what an important piece of living with a chronic illness that is and how much I depend upon it!

Any way, those are just a few of the things I’ve been thinking about lately, especially when reading Marfmom.com. There’s so much we can learn from each other, and I love coming here and feeling accepted and like I can relate to you all on some level, even if we are members of different “chapters” of the chronic illness club!

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One Comment

  1. First of all as a Marfriend you are more then entitled to use the word Marf.
    Erin that was great! While I love reading Maya’s blogs I also love when she has guest bloggers. Always great to see other people’s perspective on “things”.
    I’m a Marfmom from Canada, the conference here is more doctor orientated so my son and I were so excited to attend the NMF Conference this past summer. It took us going there to meet other Marfs from our city and province. My son hadn’t been around anyone else with Marfan Syndrome since was about 3 so he was so happy to be “his own kind”.
    I have type 2 diabetes, not a club I wanted to belong to but here I am so I have to thank you for the information on online support.
    Thank you Erin!

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