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Mama Kat’s prompt: “The ache for home lives in all of us, the safe place where we can go as we are and not be questioned” ~ Maya Angelou

I have a few different homes. I have the home I live in with my husband and our son and cat. I have my extended family home. The group of girls I grew up with. The congregation I attended from age 11 until I got married at 22. A group of my Alpha Phi Omega (co-ed) fraternity brothers.

The home I’m going to write about, however, is the one I ached for before I even knew it existed: my Marfan home, otherwise known as conference.

All teenagers, on some level, want to be accepted. It’s a time that we simultaneously scream, “I am my own person!” and “Love me, I’m one of you!” So, being a teenager is difficult enough without adding in a chronic illness that affects both your appearance and physical abilities. As I entered into those tumultuous years, I yearned for the company of other people like me.

While some may disagree with me, I don’t believe that an “unaffected” parent or friend, no matter how attentive they are, can really, truly understand life with Marfan. I had great friends and my parents tried to help me sort out this new, different life, but it wasn’t enough.

Attending conference was life changing because for the first time in my life I was completely and utterly accepted. In some ways it was more Home to me than anywhere else I’ve been. That feeling got me through a lot of hard times.

We were pretty hot back then!


Now that I’m one of the people in charge of the teen program at conference, that feeling of home is first and foremost in my mind. I want each and every teen to know that they are that they are amongst family and that they are safe. They are Home.

This is one subject where I don’t think words can adequately describe the emotions associated. My Marfamily is almost sacred to me. So, I’m reposting this video I made of conference. Enjoy.

Conference video

And to any of my readers who have Marfan or are parents of a child/teen with Marfan: Come. If you’ve ever felt that ache for the “safe place where we can go as we are and not be questioned,” come. You’ll find the home you maybe didn’t quite realize you were missing.

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2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya

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Review: In My Hands

I wasn’t sure how I would like In My Hands. The segments I posted earlier looked promising, but I’d seen the rough cut of the documentary at the Boston NMF conference and hated it. I felt like the movie had no direction and was too negative, and I walked out of the viewing halfway through.

I am extremely pleased with the final version. It is the exact opposite of what I saw in the rough cut: cohesive and uplifting.

There are a couple nitpicky issues I have though. First, the word “disease” is used frequently throughout the documentary, but Marfan is not a disease: it’s a disorder, a syndrome. I realize disorder and disease tend to be used interchangeably, but there is a slight difference and I’m rather pedantic on this issue.

Also, I felt like a lot of emphasis was put on the aortic root and monitoring that, but not much on the rest of the aorta. I don’t think Ben’s cardiologist even mentioned the rest of the aorta. Although aneurysms tend to develop in the root first, they can actually happen anywhere in the aorta at any time. It’s vital that people with Marfan have yearly echoes of the ENTIRE aorta.

So other than those small things, I loved this documentary!

If you have Marfan syndrome, if someone you love has Marfan syndrome, or if you are curious about Marfan syndrome and want to learn more, WATCH THIS! In My Hands is able to address all three groups in a way that doesn’t interrupt the flow of the various storylines.

The curious: Dr. Hal Dietz of Johns Hopkins is once again a superstar as he explains the syndrome in easy-to-understand terminology. Various, one-sentence facts also play across the screen before relevant sections. The infusion of Katie, Kami, John, Chris, and Ben’s stories bring an understanding of Marfan that no article on marfan.org ever could.

The loved ones: This film will speak to “non-Marf” parents in particular. Ben’s parents and Katie and Kami’s mom don’t shy away from discussing some of the familial strains that come with having differently-abled children. I love the mother who talked about her initial fears of letting her son out of her sight, but that now she can say “go on, get outta here!” I know (at least on one level) how scary the diagnosis is, but there is so much that we, Marfs, can do. Parents: this documentary will show kids living WELL with Marfan. It will show them dancing, doing martial arts, swimming, climbing a ropes course, playing music, and more. There’s nothing more hopeful and beautiful than that.

The Marfs: So many times while watching this I would think “Exactly! They hit the nail on the head!” John described my thoughts on having a “Marf baby” perfectly. I could empathize with Katie and Kami because I was their age not so long ago and had the same feelings about myself. It can be easy to feel alone with this disorder, but this movie will remind you that you are not alone.

I advise screening this video as a family before showing it to friends and extended family members. Marfan is a life-threatening disorder, so the documentary is not all rainbows and sunshine, although it is ultimately extremely uplifting. I believe having a run through will help you anticipate questions that might come up, or “talking points” to discuss further with your audience.

In My Hands is masterful. It is moving. It may change you; I hope that it does. Bring tissues…lots of them. The last segment is breathtaking, and be sure to watch all the credits.

* Copies are available in limited supply through the National Marfan Foundation for eligible families. The order form can be found here and the cost is $25. If you have questions about your eligibility after reading the form, you can contact Jonathan Martin at jmartin@marfan.org.

** I was not paid for this review, nor was I asked to do this review by the NMF. I paid for my copy of the documentary myself.

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In My Hands

In July 2007, Tony-award winning choreographer Ann Reinking came to the National Marfan Foundation conference at Stanford to start filming a documentary on Marfan syndrome. Her son has the disorder and, as a choreographer, Ann recognized the beauty of the Marfan body and wanted to celebrate it while also bringing increased awareness.

Finally her project of love, In My Hands, is complete. Tomorrow, Rosie O’ Donnell will be interviewing Ann and Dr. Frank Pollaro, a New York cardiologist who also has Marfan. The story behind this interview is definitely worth telling.

One night not too long ago the NMF’s head of health education, Jonathan Martin, went to go see a show on Broadway. Afterwards he waited by the stage door to meet the stars, Rosie included. Ever devoted to our cause, Jonathan gave Rosie a copy of In My Hands and asked her to watch it, which she promised to do. She contacted him a few days later having loved the documentary and they + Eileen (our head of PR) worked to make this interview possible.

We are so lucky to have someone like Jonathan working for us! He is always thinking of new ways to educate people about Marfan and make our lives easier. Very late Saturday night he IMd me to let me know that clips of In My Hands were available on YouTube; he’d spent the evening getting them ready. That is dedication! So, on behalf of Marfs everywhere, THANK YOU JONATHAN for all that you do!

I’ve got two clips to share! First is the introduction to the documentary.

Next, you’ll see two more of my favorite people, Katie and Kami. Aren’t they gorgeous? They’re two of “my” teens and I am so proud of them! Incidentally, they’re also spotlighted this quarter on our teen program website. This segment brings tears to my eyes.

Over the next few days I’ll post some other clips from the documentary. I haven’t gotten to see the entire presentation yet, but I’m very excited about it. From what I can tell, Ann and her team have done a phenomenal job capturing the Marf spirit and beauty. Call me biased, but I think Marfs are some of the most beautiful people and it’s my wish that every single one of the teens would believe and embrace this. I hope this documentary, which focuses on a small group of our teens, will help them all see that.

For more information on In My Hands, go here.

For more information on how to listen to Rosie’s show tomorrow (including a free 7 day trial of Sirius Radio), go here.

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Conference Recap

Before I give you the rundown on conference, I’d like to take a moment to summarize my thoughts on this year’s experience. I enjoy working with youth: specifically, teenagers. I’ve done it a lot, from research to being a counselor at Especially for Youth (a weeklong summer camp put on by my church). I can honestly say that in all my years of working with teens, I have never worked with a better group than the one at the Marfan conference. Everyone treated each other with respect. I never had a participant back-talk me or another adult during the weekend. On the contrary, they frequently expressed gratitude for the effort they knew went in to planning the conference. I saw no social hierarchy. All the teens were friendly and encouraging to one another, no matter their age (and we had a big range: 12-19), race, or physical appearance. Maybe it’s just because I’m a mom now, but I got emotional just watching them interact. It was beautiful.

Sat. night a family from another country came to see me and I took them to meet some of the teens. It was the first time the son had ever met another person that looked like him. The father looked around at the teens in wonder and asked me “How many years have these kids known each other?” He was shocked when I told him “only about 24 hours. 70% of the teens have never been to conference before.” That’s how quick and complete the bond is. I feel really humbled that they are willing to open up and let me be a part of that.

Thursday night I’d made plans to have dinner with a few friends, which quickly turned into a dinner for 16 + Menininho. When I walked into the hotel to let people know we’d arrived, I was greeted with “Where’s Menininho?” No sooner had I said “in the car” than the van was swarmed by a group of teens clamoring to get him out and into his stroller. Dinner was great. I hadn’t seen anyone for over a year and it was the first time I got to meet my friend Debbie and her family in person (we’ve chatted online almost every day for the past 3 months). That night I hung out with the teens a little bit before going to bed early (12:30).

Friday morning I had leadership training seminars until lunch. After eating with Mark in the underground city below our hotel I met up with a few teens to finish the memory boxes for Dylan and Erin’s families (just realized I never took pictures of them. Darn!) and prep for officially kicking off the weekend. I can’t think of a better way to get things started than by having Rick Guidotti from Positive Exposure come to speak. Rick used to be a high fashion photographer and left the field to create this organization in 1997. He saw that medical textbooks tend to dehumanize patients with rare genetic disorders. Positive Exposure works with medical professionals to show them the people behind the illnesses. Rick also does workshops for youth with genetic disorders, to help them see the beauty in themselves. This year he sponsored a photography contest for the teens. Any kids without cameras were given a digital disposable camera and all were charged with taking pictures that best demonstrated Marfan beauty. Once we determine a winner, I’ll be sure to post a link to the picture!

My friend Marsha was in charge of planning the conference Welcome Event. It was state fair themed and had all kinds of fair type games for the young kids. For the teens? Well, that’s where Ben, Steve, Jonathan, and I came in. We were recruited to be the faces behind the pie-in-the-face game. As you could see from the picture I posted as a teaser, I came prepared. Ben (my partner in teen programming crime) and Jonathan (head of health education at the NMF) were by far the favorite targets…I guess Steve and I were just too sweet! The pies were just whipped cream in a tin till the end, and then our respective spouses/friends got us with REAL pies! I’d picked chocolate….mmmmm!

We follow generally the same schedule year to year, and Friday night is one of my favorite parts of conference. After we’d had a chance to clean up from the pies, we held the Living Successfully workshop. Ben, myself, and 2 older adults shared our stories and then we opened the floor for discussion. After that, we broke up by gender in different rooms to allow for free discussion on anything. What is said in those rooms stays in those rooms.

Saturday morning was breakfast with Dr. Dietz. For those of you who don’t know have the pleasure of knowing him, Hal Dietz is: 1) an angel, 2) the man who discovered the mutation that causes Marfan, 3) the man who co-discovered the related disorder Loeys-Dietz syndrome, 4) a cardiologist by training but a self-taught geneticist, 5) one of the nicest, most human doctors I have ever had the pleasure of meeting. Every year he sets aside an hour and a half of his insanely busy schedule to spend with the teens just answering any questions they come up with. Ben has to drag him out of there at the end because Dr. Dietz doesn’t want to leave till all the teens’ questions are answered, even if that means being late for other meetings. Like I said, one of the nicest doctors ever.

Next was the hardest part of the weekend: the Coping With Loss workshop. The crappiest part of Marfan is that kids have to get used to loss early. I have lost 10 Marf friends thus far. This fall we lost 2 of our beloved teens, like I’ve mentioned before, and those deaths were the first for most of the teens. I hate it. I hate it I hate it I hate it. I hate that these teens have to get used to death in that way so early. However, since we have to deal with the reality that we’re going to lose friends to this illness, I’m glad we have the foundation. We were lucky enough to have two social workers who also have Marfan run this workshop and I think in the end it was really healing for everyone.

Saturday afternoon we chartered two busses and drove all the teens into Wisconsin for a boat ride on the Mississippi River. SO. MUCH. FUN. After everyone was settled and we’d had a little pizza, I got the party started with a little dancing and pretty soon everyone was getting down! Taylor Swift’s music was a big hit and I was pleasantly surprised to see that so many guys knew the lyrics to Love Story. We ended up being on board longer than anticipated because the bridge that had opened up to let us go down the river got jammed, and we couldn’t get back until technicians had re-opened it. My favorite pictures from the weekend are from this field trip.




Sat. night dinner was at a fun Italian restaurant, followed by a dance (the DJ even had Marfan!). Some of the kids hit up the pool for a while. We called an end to official activities around 11:30 PM. The teens retreated to a hotel room (I think most nights they were together till 2 AM) and us adults went to the hotel restaurant for “grown-up time.”


Sunday came all too soon! After breakfast, the teens convened for a workshop on being our own advocates, taught by long-time NMF volunteer Chris Heany. I cannot stress this subject enough! Patient advocacy is basically what I got my Masters in. Whether you have a chronic illness or not, know how to talk with your doctor and your child’s school to get what you need! Afterwards the teens had the opportunity to write notes to Dylan and Erin’s families and put those in the memory boxes we’d made and then play games and hang out with each other.

We got back together with the parents for the final luncheon and close to the conference. Awards were given out and then it was time for the Living Successfully Panel. 5 of us spoke. I was so proud of Laurel, not only for speaking but because she also received the Rising Star award (by 14 she’s now received the 2 highest awards a young adult can get!). I was the last speaker on the panel, and then all of a sudden it was time for the final slideshow and that was that. Conference was over.

Every year I think conference gets better and better. I’m already looking forward to when Menininho will be a participant in the teen program (with other people running it, of course!). I was grateful for the love and acceptance that my Marfamily showed him. I hope that as the years go by we’ll see lots more Marf babies like him.

CAN’T WAIT FOR HOUSTON!!!!

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Speech

I was still editing this up until about a half hour before I had to give it, haha. Laurel’s mom got the whole thing on video, and that is on my Facebook (you may have to scroll down awhile on my page to find it). I didn’t get nervous until about an hour before it was time and even though I was speaking in front of my Marfamily, my hands were still shaking as I spoke. Overall I think it went well though, and I’m really grateful for the opportunity I was given to speak.

I’d like to thank the NMF for the opportunity to speak on the panel today. I’ve been asked to talk today about my own experiences with Marfan; I expect my story is very much like many of yours.

My parents always knew that something wasn’t quite right with me. I come from a long line of short people and so I think my mother was the first in the family to have the OB look at her newborn and proclaim “Well, you’ve got a basketball player on your hands!” It wasn’t until I was 8, however, that the term Marfan held any meaning to me; I fainted at a street fair, and that was what set the ball rolling on my diagnosis. The cardiologist we were referred to told my parents I had Marfan, gave them a long list of things I couldn’t do anymore, and sent them on their way. They were left to navigate the diagnosis on their own, which sometimes meant they were operating on wrong information. At first I thought it was pretty cool that I had the same illness as President Lincoln, but as I got older I became increasingly angry and bitter. I was not included in the decision-making process about my healthcare and I felt like my parents didn’t let me do ANYTHING. To make matters worse, I was being given a hard time at school. In an effort to “educate” my classmates, my teachers would say things like “Now everybody, we need to be very careful around Maya. She has a heart problem and if she fell down the stairs or anything, she’d be really hurt.” Kids came up to me, kickballs in hand, and would ask “So, if I throw this ball at your chest I’ll kill you, right?” After another afternoon of me crying about how hard my life was, my mom suggested I write my cardiologist and ask him if there were any other kids with Marfan my age who I could connect with.

That started my connection with a local Marfan group. There was a girl my age, Sandy, and we became fast friends. Unfortunately, shortly thereafter, Sandy died of a dissection. We were 13 years old. Someone had apparently forgotten the rule that when you’re a teenager, your best friend is not allowed to die. In order to deal with my grief, I decided that in honor of Sandy, I would educate everyone about Marfan so no one would die anymore. I started with myself, because I needed a major attitude adjustment. I contacted the NMF to get materials and read through everything, then taught my middle school and all the faculty and staff. To remind me of my goal, I hung up an NMF poster that had some of the Board of Directors and Professional Advisory Board members on it. I decided that when I grew up, I’d go to Stanford and work with them to find a cure for Marfan. I attended my first conference that next summer and it was life changing. I remember walking in to the hotel and seeing Julie Kurnitz and Carolyn Levering from my poster and being starstruck. And these people talked with me. They included me. I think that really sets our organization apart, that everyone is so welcoming and helpful, from the top of the foundation to the bottom. I started volunteering with the NMF at that point.

Now, throughout all of this, I never quite met the clinical criteria for Marfan. I operated under the assumption that I had Marfan, although my presentation was somewhat atypical. This meant I still had echoes every year, followed activity guidelines, and even had a couple of surgical procedures during that time. At the end of freshman year of college I was getting some tests run when a geneticist told me he was sure I had vascular Ehlers-Danlos and I had to promise not to leave the city until I had been tested for it. The test came back negative a couple of months later, and my mother and I both cried: she because she was glad I didn’t have it and me because I was frustrated that I still did not have a concrete diagnosis. About a year and a half later my nurse practitioner brought up the possibility of Loeys-Dietz, and I had the genetic test. Again, negative. At that point I decided I wanted the FBN1 test for Marfan run. I was getting engaged and my boyfriend and I were talking about kids and it was important to me to know what I was dealing with before we made any decisions. A few weeks later, I finally had the answer I had searched 13 years for: I have Marfan. And last spring, with the diagnosis of dural ectasia, I finally met clinical criteria for Marfan. The entire process took 15 years.

In December, I graduated with my Masters of Public Health. I was definitely influenced by my activity with the NMF. I want to find a job as a patient navigator, to help people with chronic illness navigate the healthcare system. Being your own advocate is so important, and I hope to be able to help others have a more positive experience than I did initially.

In February of this year, I gave birth to a baby boy, Menininho. The decision to have a biological child was not easily come to. Mark and I spent two years researching and debating, but eventually decided that Marfan is more of a blessing to me than a curse. However, even while pregnant there were nights I would cry to Mark that a child deserves to have a mother who could carry him and chase him and never be tired, and Mark would remind me that there are no perfect parents, just perfect love. I was lucky enough to have an OB who specialized in Marfan. My pregnancy was not terrible, though not without complications either. I would be lying if I said that being a mom isn’t physically demanding. For instance, Menininho is getting to the point where it’s difficult to carry him, and that requires some changes to our daily schedule. However, being a mother also makes me incredibly happy, and I believe that even though we have some physical limitations, we deserve the same chances for happiness as everyone else. Some day I believe we’ll add to our family and adoption is definitely something we want to do, but right now we’re just taking everything one day at a time.

As we get ready to end conference this year, I feel a lot of hope. Our community has come a long way in terms of medicine, advocacy, and the ability to connect with each other in the 10 years I’ve been active with the NMF, and I just know great things are in store for the future. Thank you.

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Slideshow

My dearth of recent posts is due to me working on this in all my free time:
Teen Slideshow

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