March 25, 2015
by marfmom


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Everything You’ve Wanted to Know About Conference

If you’ve somehow missed it, registration for the 31st annual Marfan Foundation Family Conference is live!

I’ve come across a variety of questions online and I thought I’d take a stab at answering some of them for you, since I’ve been around the conference block a few times.
Marfan Conference

I’ve never been. Why should I go to conference? You’ll learn more in that weekend about your or your child’s diagnosis than you will in a year on your own. You/your child can be evaluated for free at a clinic staffed by the country’s experts. You’ll get to spend time with hundreds of other people who get it. It’s invaluable! When I first went as a teen, I got a lot out of seeing adults with Marfan living well. My interactions with those adults was as important to me as my interactions with the teens my age (most of whom I’m still in touch with 16 years later).

Will my “unaffected” child get anything out of it? Mine sure does! Many sibings come to conference. The teen program has a workshop just for them. The Menininho attended the kid program last year for the first time; J is too young still to go. M had a great time making “Marfan friends,” and getting to ask questions about Marfan syndrome that maybe he wouldn’t feel comfortable asking at home. Plus, a lot of the kid program isn’t necessarily connective tissue disorder specific. For example: Saturday they’re going to spend the whole day at Legoland and the planetarium.

What about my unaffected significant other? There are workshops for them too! My husband, Mark, co-runs a workshop for spouses/partners, and there is a couples’ workshop as well. Plus, this gives them a chance to learn all about Marfan syndrome. Mark loves coming to conference every year and has made friends of his own there.

What about those of us with related disorders? There is a Loeys-Dietz syndrome track and workshops for other related disorders as well.

Is registration per person or per family? Registration is per adult. Children 18 years and under are free with a registered adult: 1 adult can bring multiple children for free, but children/teens may not register for conference or come alone.

What’s up with scholarships? Scholarships are for first time attendees from the United States. Most are partial scholarships, covering 1 adult registration and 2 nights hotel. Scholarships never cover transportation. The deadline to apply for scholarships is April 13th, and decisions will be made around April 17th.

If I’ve applied for a scholarship, should I go ahead and register for conference, clinic, and a hotel? You may register for clinic, but do not register for conference or reserve a hotel room until you’ve heard back about the scholarship.

What if we receive a scholarship and end up not being able to attend? The scholarship goes back into the scholarship fund and you could re-apply for a scholarship another year.

Can I attend the kid program with my child? Who is taking care of the kids, anyway? Family members do not attend the kid (or teen) programs with their children. However, there are really fantastic chaperones! These include medical professionals, Foundation staff, and (background checked) volunteers. Some of the kid program coordinators have been running it for years and volunteers are either affected themselves, or have a loved one who is. The children’s program schedule is online too. The children’s program is for ages 5-12. Do contact Diane M. at the Marfan Foundation with any questions or concerns that you have!

My child has special needs (a wheelchair, food allergies, another diagnosis, etc.) Please let Diane M. at the Foundation know ahead of time. The earlier she knows, the better accommodations can be handled.

What do the teens do? A full schedule is available on the conference website, but we’ve got workshops (they address both medical and social issues), a field trip, a dance, and plenty of time to get to know each other planned. The teen program is for ages 13-18.

What about the young adults? The young adults program is for ages 19-25. They have their own workshop track and social activities, as well as the option of attending any of the adult programs that they would like to. You can find their schedule here.

Can my child attend a program outside of their age group? No. The programs have strict age-cutoffs, but be assured: the programs are designed to meet the needs of the variety of ages of participants.

What about evening activities? The teens and young adults have activities till late at night. For adults and kids, there are hospitality suites at the hotel to facilitate meeting new people. Evenings are also a great time to check out things local to Chicago: I suggest the pizza!

Which hotel should I stay at? It’s up to you! Both are close to the hospital where the adult workshops will be held. They’re also within walking distance from each other. The teen program activities will be split between the two hotels.

How does clinic work and when will we hear back about it? There are two days to the free clinic. The first day has echoes and eye exams. The second day has appointments with a variety of specialists: cardio, ortho, genetics, pulmonary…sometimes GI and other specialities (I do not know if GI or anyone else will be at clinic this year). You must register for the clinic by May 15th. You should consider sending pertinent medical records with your application so that the doctors can review them ahead of time. Priority is given to patients without access to knowledgeable medical care. You may not receive your clinic appointments until shortly before the conference, so assume that you have an 8 am appointment on the first day you’re attending clinic (whether that be Thursday or Friday) when planning travel arrangements.

What about Foundation members who only speak Spanish? We have a Spanish language track at the conference. I’ll update here once I know about Spanish language interpreters for the clinic.

Conference isn’t near me this year. Does it change location? Yes. Conference moves around the country every year. Where conference can be held depends in part on clinic availability.

What questions have I missed? Ask in the comments!

Marfan conference teens

February 27, 2015
by marfmom


2 Comments

The New Orthopedist

After our fall appointment out of state, I decided it’s time for J to have a local orthopedist. There’s no reason to see Big Name Doctor until J is closer to needing surgery. We can do regular x-rays here and send them to our other hospital if necessary for a second opinion. I called our local Marfan clinic this week and magically got an appointment to see their orthopedist two days later (yesterday).

Now, the doctor himself is fine. I have no doubt he knows the spine inside and out, though some of what he said in terms of Marfan-specifics is a little different from what I’ve heard elsewhere. Still, really nice guy who was great with J, and I feel like we’ll get good guidance from him. Plus, it sounds like this hospital is doing or will be doing the Magec rods soon, and I think I’d want to go that route if he needs surgery at a young age (I believe they’re approved for ages 10 and under).

Specialist aside, the other people we met with today were a little more questionable. J’s nurse asked if he’s on losartan for aortic stenosis. Ummm….how about the opposite?! Clearly orthopedists aren’t cardiologists, but if you’re going to specialize in Marfan you ought to know the most basic part of it, right?

The “best” was this conversation that J had with the resident though.

Resident: So J! Are you going to be the next Michael Jordan or Lebron James? Going to be a basketball star?

J: No.

Resident: Why not?

J: My mommy won’t let me.

Way to self-advocate, son! Even at 4, he knows the rules. I was both proud of him, and ticked at the resident. His stupidity rubs in what J can’t do, and he’s already sensitive to that!

“That’s right, I won’t let you and more importantly your cardiologist won’t let you!” I said.

The resident asked if that’s because he has a PDA. No. Again…Marfan = aortic aneurysms.

Like I said: I don’t expect every doctor to know everything about Marfan. But if you’re working in a Marfan clinic, no matter the speciality, you ought to at least know that the most dangerous part of Marfan is aortic aneurysms/aortic dissection.

Luckily, the actual doctor knew enough to ask about his aorta and eyes. We went over J’s xrays and his scoliosis isn’t at the point of needing intervention yet, but we’ll go back this summer to continue to monitor.

I’m proud of J for handling appointments that are scary for him (like this one), and for starting to advocate for himself.

February 23, 2015
by marfmom


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The Menininho & J Rate Oscar 2015 Fashion

Menininho (6) is my red carpet-watching buddy. As he gets older, he gives some great commentary, and I thought it would be fun to share some of that with all of you. J (4) also wanted to chime in.

Let’s hit it!

Jennifer Lopez, in Elie Saab

M: It is like, amazing. Her dress is so big. I like the way her hair is on the dress. It’s super sparkly.
J: Awesome! It’s cooler than my shirt.

Zoe Saldana, in Atelier Versace

M: It looks like a normal dress to me.
J: It’s cooler than (J-Lo’s) dress.

Marion Cottilard, in Dior Couture

M: WOW! Her dress looks like a bed cot.
J: It’s embarrassing!

Laura Dern, in Alberta Ferretti

M: It looks like glittery metal. It’s so dark I could compare it to a dark, dark night.
J: Well…it’s better than the statue.

Felicity Jones, in Alexander McQueen

M: Wow, that face looks like my aunt Gabriella! That dress looks like a soft, soft cloud.
J: It’s better than play-doh.
Me: Actually, she does look like my sister from this angle…I also love the skirt here!

Neil Patrick Harris, in Brunello Cucinelli

J: I hate it. Cause I don’t like it.
Me: M couldn’t be bothered to comment on this. I actually don’t mind the suit!

Patricia Arquette, in Rosetta Getty

M: She looks like a super dress fixer. That means she can fix any dress, any time.
Me: This is where J started to get antsy and very particular in which outfits he’d comment on.

Lady Gaga, in Azzedine Alaia

M: Her hair looks like a wig. Her gloves look like cooking gloves. Her dress…looks like…very, very…um, it looks like air. Dark air.
J: It looks like a cloud and a red balloon!

Solange Knowles, in Christian Siriano

M: Yah…I don’t like it. It looks like a shirt. A very. big. shirt.
J: It’s so ugly.

David Oyelowo, in Dolce&Gabbana

M: His suit reminds me of red velvet cake. That’s a good thing. I like the bow tie.

Chrissy Teigen, in Zuhair Murad

M: Her face makeup is ugly but her dress looks amazing. It looks like ice.
J: Blue is my favorite color! I love that dress.
Me: Forget anything else my kids have said. They clearly have no taste.

Eddie Redmayne and Hannah Bagshawe, both in Alexander McQueen

M: They could win 1,002 of those awards. I like her hair and the feathers. I like his bow and his tuxedo, his smile, and his hair.
Me: Why yes honey…many women (and men) love his smile….

Jared Leto, in Givenchy

M: He looks scary. I want to skip him!
J: AAAAHHHHH! I hate his shadow! His outfit is scaring me.

Emma Stone, in Elie Saab

M: I like her hair. The dress reminds me of a yellowish greenish crayon.

Scarlett Jonahsson, in Atelier Versace

M: Her dress looks like a plant. I like her necklace; it looks like a Christmas tree.
J: What is that? [“It’s a necklace.”] It looks like a monster!
Me: “Throat fungus” came to mind for me, but a Christmas tree and a monster work too!

Keira Knightley, in Valentino Couture

M: (gasps loudly) I love it! She looks like a garden! A garden with lots and lots of flowers and butterflies. I like her hair and her makeup. I can’t read the words but I love looking at it all.
J: WHOA. I love the flowers on this dress.

Lupita Nyong’o, in Calvin Klein Collection

M: I don’t like that one, because it looks like a normal dress. It’s boring.
J: I like her dress, because it’s so fashiony.

Favorite
M: Keira Knightley
J: Jared Leto
Me: Hannah Bagshawe, Felicity Jones, and David Oyelowo

Least Favorite
M: Jared Leto
J: Marion Cottilard
Me: Chrissy Tiegen