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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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Slideshow

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

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My Life With Marfan, Part 4

Previous installments of this series can be found here, here, and here.

The next 8 years were very busy. My doctors argued back and forth about my diagnosis. My aorta continued to grow steadily but slowly and I didn’t meet exact clinical criteria for the Marfan syndrome diagnosis. Some doctors said I was a normal kid who just happened to have a few Marfan characteristics; others said I should maintain my activity restrictions because my aorta was still growing. In my heart, I KNEW I had Marfan, no matter what anyone said. I continued my various awareness projects.

Towards the end of my freshman year of college, I needed to have a couple MRIs done. I opted to take Xanax beforehand because an hour and a half in that machine was going to make me too claustrophobic. Mark was learning more and more about Marfan, so I asked him to serve as my driver and go to my appointments with me to take notes, since I wasn’t sure how much I would remember being under the influence and all.

My last appointment of the day was with a geneticist and genetic counselor. Dr. Clarke, the geneticist, reminded me of a very serious Santa Claus. He asked me a bunch of questions, which concluded with: “Have you ever heard of Ehlers-Danlos syndrome?” I had not. He explained to Mark and me that I had most every symptom of vascular-EDS (there are many types of EDS) and I had to PROMISE not to leave the city of Cleveland until I had been tested. I pressed Dr. Clarke for more information, which he reluctantly gave to Mark after I vowed to just look it up on the Internet when I left his office.

Now, long story short, vascular-EDS tends to be fatal by the early to mid 40s. It’s a much worse illness than Marfan. My mother panicked when she got this information and prayed that the test (which involved sending a piece of my skin across the country and waiting 2-3 months for the sample to grow enough to be analyzed) would come back negative. I prayed that it would come back positive, because I was tired of all the arguing over my diagnosis.

2 ½ months later, towards the end of July, I received a phone call with the results. My mother and I both cried: she, because she was overjoyed and relieved, and me because I still lacked answers.

My junior year, Libby called Mom and me into her office to tell us of a relatively new disorder: Loeys-Dietz syndrome (LDS). Many patients who were previously told they had Marfan were being re-classified as having LDS, and she believed I should be tested because I had a fair number of LDS characteristics. A few months later those results came back negative. I insisted on having the genetic test for Marfan at that point.

You might ask why I didn’t have this done sooner, and there were 2 reasons: 1) My parents (wrongly) believed a firm diagnosis would keep me from getting life insurance (I was already disqualified) and 2) My doctors thought it was so unlikely that I had Marfan that they said the test wouldn’t be worth it. They were wrong; my test came back positive.

That summer found me newly engaged and headed to my first conference in years. Mark and I wanted to know more about our options for having a family and I knew the best place to get answers would be at conference. Although this time I was traveling alone, I felt as comfortable there as I had when I was 14. There was a big dinner the first night there, and I recognized a girl I’d known from my first conference, Emily. After the dinner I found her and introduced myself. She remembered me and invited me to come with her to work with the teens. She and another guy from my first conference, Ben, were in charge of the teen program now.

The rest is, as they say, history. Ben and Emily invited me to continue to help out with the teens, and I’ve loved every minute of that. The program has continued to grow. We have almost 80 teens registered for this conference. We run a website for them now (teenspace) and have a social networking site (NMF Connect). I absolutely cannot wait for conference!

Me, Lindsey (Ben’s then-fiancee, now wife), Ben, and Emily

S.’s square on the Marfan memorial quilt

After I’ve had a chance to recuperate, I’ll be sure to post pictures and video from conference, as well as my speech.

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