A couple Saturdays ago we had the opportunity to go to Six Flags with Mark’s company. I’d never been to one before and it was great! I do think zoos are a better place for animals than these amusement parks though…some of the tanks and cages were so small! Menininho loved the cougar the best because it reminded him of Oliver.
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!!!!
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.
My dearth of recent posts is due to me working on this in all my free time: