August 9, 2013
by marfmom
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Friday Favorites

It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.

<div align=”center”><a href=”http://marfmom.com/tag/friday-favorites/” target=”_blank” title=”Friday Favorites with Musings of a Marfan Mom & Anktangle”><img src=”http://1.bp.blogspot.com/-vS0_oMUlGCE/UXlghB3-lxI/AAAAAAAAKB8/ZfzQhlunNfc/s1600/friday+favorites+125.png” width=”125″ height=”125″ alt=”Friday Favorites with Musings of a Marfan Mom & Anktangle” /></a></div>

August 8, 2013
by marfmom
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Marfan Foot Fusion Surgery

Today’s guest post is by my friend Georgia. She is sharing her experience with multiple foot surgeries. Thanks, Georgia!

Growing up the most obvious outward sign that I had Marfans was my foot. My right foot was not only flat but turned inward. I walked on the side of my foot. Over the years it got worst until at 13 the callous that should have been on the bottom of my foot was on the side so far that up it reached all the way to my ankle. I would wear holes into the side of my shoes from walking on it and half the sole would be completely untouched. They tried every type of brace and insert they could but none worked with how bad it was.

After lots of consulting and searching my parents found a doctor about six hours away from where we lived who seemed perfect to do the surgery. He seemed knowledgeable on Marfans, came highly recommended, and worked at a well-known children’s hospital. It turned out his understanding of Marfans Syndrome came from books not experience. He decided to fuse my foot and at the same time my spine where I had a spondylosis of the L5 S1 vertebrae. That combination was a bad one. With my joints healing so slowly I couldn’t stand without crutches but I couldn’t use crutches because of the spine. I also couldn’t do the proper spine exercises because of the foot.

The end result was that the fused bones in my foot collapsed to give me a rocker bottom foot. I also needed another surgery to remove some of the hardware that fell out of my bones. Yep the metal staples just fell out of the bones because the Doctor underestimated the looseness and hypermobility of Marfans joints. I was in and out of a wheelchair for a while and back making the rounds of never ending trial and error foot braces. It also took a long time for me to progress to walking freely with no sort of mobility aid.

There was a positive to all the negatives. The fusion made it easier to brace the foot. The fusion gave it enough stability and a better position so AFO (Ankle Foot Orthotics) worked where they hadn’t before. It wasn’t the hoped for results but it kept me off of crutches (FINALLY) and walking on my own for another good 10 years.

Slowly over the years the foot collapsed more and more. The hypermobility of the joints made the fusion disappear and I got to the point where I was falling if I hit uneven ground, and I required canes and crutches more then I didn’t. I was in a lot of pain. There was no other course of action but another fusion. This time I needed a bigger one. My foot had misaligned so they had to fuse the majority of the foot and preform an osteotomy. That’s where they sever the heel and reattach it to the foot to realign it. They also had to stretch the Achilles tendon. I believe the final choice of Achilles tendon stretching surgeries was percutaneous method where they make several small cuts into the tendon to stretch it out.

X-ray before 2nd surgery

Needless to say there was a long recovery period. I was bed bound for six weeks and not allowed to even let the bottom of the foot rest on the ground. I had to lay with pillows under the knee and upper calves to try and keep any weight off of the heel/back of the leg/foot. Then it was another 3 months of not putting weight on my foot although I could finally rest it on the ground for balance and to sit upright. I used a knee scooter during that time period. A knee scooter is exactly what it sounds like. A scooter you ride kneeling on. I would rest my right knee on it and push with my left. I have to say it was kind of fun although with my knees tendency to dislocate I personally wasn’t able to use it much more then Doctor appointments. There was also the hurdle of my balance. I had lingering problems from a stroke I’d had years earlier.

When I was able to start physical therapy it took only 5 days to get me walking with a walker. The only problem was it hurt, a lot. They were finally able to figure out that my heel had not healed. It was not attached to my foot. Oh it was screwed in place but the bones never grew together. I have osteopenia in my extremities and osteoporosis of the spine and hips. So they thought maybe that was the problem. Lots of doctors later they decided it was a combination of the Marfans hypermobility and the osteopenia making the bones weak.

The bone specialist wanted to start me on a medication for osteoporosis and redo the osteotomy (Recut the heel off) I refused. The doctor told me apparently is impossible for bones to grow back together if they haven’t yet a year later. My next appointment two months later showed it had grown back together. The doctor said in his 20 + years as a foot surgeon that had never happened before. I gladly accepted that little miracle. My grandmother very much attributed it to prayer. She was our family’s prayer warier and told me she’d faithfully prayed for that every day for the last year.

X-ray after 2nd surgery

I can walk around the house again without crutches although standing for anything longer than 5 minutes is to painful. When going out in public on any sort of unfamiliar or uneven ground I use forearm crutches. When there is any sort of distance or there is a need to stand I have to use a wheelchair. Even with this I don’t consider the second surgery a failure like the first. The goal was to keep me walking and avoid amputation and they did that. The doctor had actual experience on Marfans feet and was willing and did consult with some of the Marfans community’s best doctors. My mobility is limited and there’s a fair share of pain still involved. I’m able to manage it without pain meds and have an insanely awesome support system to do or help me do what I can’t do on my own.

Each operation had its downfalls and challenges, but each operation played its part in keeping me more mobile than I would have been before it. I don’t think there were any other options for my foot either time. Outside of having a doctor who 1.was more competent then the first one, and 2 who wouldn’t have done both my spine and foot together, there was nothing that could have been done differently. My foot was severely deformed from the Marfans. So much so that still today the rest of that leg is misaligned because of how badly the foot was twisted. It left my knee dislocating at the slightest wrong movement and my hip cracking through the wall of the hip socket. So really there was no choice. If there had been any other options then the first fusion my parents would have taken it. We played the hand we were dealt. With the advances they have today I have no doubt the outcome would have been different. The experience and options they had for my second foot surgery compared to my first were amazing. I don’t regret what I went through. I know that myself and my family fought to the best of our ability.

August 6, 2013
by marfmom
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The National Marfan Foundation Becomes The Marfan Foundation

As most of you in the Marfan syndrome and related disorders community probably know by now, during our annual conference last weekend our foundation (formerly the National Marfan Foundation) unveiled our new brand, complete with a new name (The Marfan Foundation) and logo:

Obviously, this came as a surprise to people, and our logo is a significant change. Of course the big question is “why change anything?”. The answer is a little long for a Facebook comment, especially when people are asking on multiple posts on both my personal and blog pages, so I promised to write a blog post about it.

Please realize: these are MY thoughts and opinions as someone who participated in this process (I’m a member of the Foundation’s board of directors), and NOT any kind of official statement from The Marfan Foundation. For an official statement, you can go here. More will be coming from the Foundation once the new website is up and running in a few weeks.

I’ve been an active member of the Foundation since I was 13 years old. Since that time, our community – the Marfamily – has accomplished some awesome things. We, with the help of our support center and the Internet, reach thousands of families all over the world and connect them with information, support, and medical care. We offer research grants, both to seasoned researchers and up and coming stars. We founded the Thoracic Aortic Disease Coalition to collaborate with other organizations. We’re seen as a leader internationally. We’ve given hope when doctors said there wasn’t any, and we’ve saved a whole lot of lives.

All this over less than 35 years, having started as a group of four women and Dr. Pyeritz, in Dr. McKusick’s living room. Not bad, eh?

As we have continued to grow however, many questions have come up: How do we want to serve/partner with other related disorders? What are our goals now that we’ve achieved a longer life expectancy? How do we increase visibility and take fundraising to the next level? Given that most people get their information online, how do we make sure people can find us and access the services that we have to offer? And how do we make sure that we’re meeting everyone’s needs?

So, two years ago we started interviewing companies to help us take the Foundation to the next level. This process wasn’t about creating a new name and logo, it was about answering those questions above. The Foundation sent out surveys to the entire community to get feedback about our website (which I think we can all agree needs major updating), as well as to learn how members of the Marfamily view the Foundation: what we do well, what we can improve, what makes us us. There were interviews with volunteers of all ages, as well as with physicians. Staff and board members met with our branding company regularly. I found it to truly be a collaborative process: the company was not just handing us things and saying this is what you have to use. We gave feedback and made revisions. As we answered those questions I mentioned, a new name and logo evolved because we realized that what we’d been using wasn’t fully serving our purposes before.

The new name demonstrates that we are the leader in our field. It does not mean that we are now an international foundation, but I think it reflects that people from all over the world look to us for information. It also puts the focus on Marfan, which is what people know us for. And besides, many people were already calling us the Marfan Foundation anyway!

I was initially resistant to changing the name or the logo. I don’t like change. Our logo was beautiful and warm. The NMF was a nice nickname for those of us who knows what it stands for. But, for others who didn’t know, it may have made them feel like they weren’t “part of the club” (that’s what acronyms do – they are not inclusive). As we as a board and staff went through this process, I changed my mind about not making any changes. I still believe our old logo is beautiful and warm, but I don’t believe the heart or the initials really communicate who we are anymore.

First of all, we had multiple logos. We had a logo with our full name and one with initials. We had logos for every conference, and logos for every chapter. We are a cohesive community and that isn’t cohesive. Plus, when we used the initials, we weren’t saying Marfan and that was a wasted opportunity to educate.

Second, Marfan is about so much more than our hearts. Concerns have been voiced by members of our community that the Foundation isn’t paying enough attention to non-cardiac issues. Until the start of our new “Quality of Life” task force, almost all of our research funding was going to cardiac or genetic studies. Not everyone is affected cardiovascularly, and now that we’re living to old age, there are so many other issues to address. Marfan syndrome is not a heart problem, it’s a complex connective tissue disorder. A heart logo gives the initial impression that this is just something that affects the heart, and that’s not what we want to say. I know that it’s the aortic issues that are life-threatening, but then again, lung issues are also life-threatening. And, once you have aortic surgery, there are daily issues that progress and fairly significantly affect daily living.

Furthermore, basically every single other cardiovascular organization uses a heart in their logo. We want to stand out from the crowd. We have to stand out from the crowd in this time of decreased donations and research funding. Yes, I realize that sounds a little harsh or corporate, but the reality is that in order to pay for the programs we currently offer, let alone develop new programs and additional research grants, the Foundation has to be fundraising. I’ve come to learn there is a science behind logos and branding. Whether I think the new logo is the Best Thing Ever or not is less important to me than whether it’s going to accomplish what we need it to so that we as a community can be doing more to touch and save lives. I truly believe this re-branding, logo included, is going to help us do that.

I also want to add that we’re not doing away with hearts totally! Just because one isn’t in the main logo doesn’t mean they won’t appear other places. I know our HEARTworks gala is going to remain as such, for example. And, when we use the heart, it will have greater meaning because we will use it selectively.

The new logo, for those that haven’t seen the explanation, was designed to emphasize the word Marfan, which could get a bit lost in the shuffle before. That word is the most important takeaway from our logo. The graphic – two overlapping links – represents the connection between Marfan syndrome and related disorders. Personally, I also think it looks a little like links on a DNA strand.

We also have a new tagline: “Know the signs. Fight for victory.” Previously we had multiple taglines. (“Know the signs. Save a life,” was for the emergency medicine campaign. “Educate. Support. Research,” was our general one. There may have been others.) This will appear on everything. I’ve seen some questions as to what victory means, and whether it means cure. Victory does not mean cure here. The victories we’re fighting for are both big and small, and what victory means is different for every person. For some, a victory is getting out of bed in the morning. For others, it’s having a successful surgery. One of my greatest victories was having my babies, and that is a victory that is not yet available to all women who want it. These are victories worth fighting for. It’s why I started this whole blog in the first place.

I am proud of where we’ve come from, but we have so far left to go. There will probably always be more for us to do, and further evolutions of who we are to get us to those points. If you love the changes, great! If not, I’m not asking you to shove aside all your feelings right now and agree with me (though civility is appreciated!). I mean, our board of directors doesn’t agree on everything all of the time, so why would the Marfamily as a whole?! What I am asking for is patience, and a continued dialogue. I’ve taken the feedback I’ve received over Facebook back to the Foundation. I always do, whether it’s positive or negative. The name and logo are set, but other things are evolving. As the new website is released in a few weeks, let me know (or the Foundation directly, via Facebook or email) what you think. Ask questions, suggest tweaks to programs (or suggest new programs). If you’re not already involved in a volunteer capacity, consider it.

If you have questions about what I’ve written let me know, and I’ll do my best to answer. And always know you can contact the staff directly as well!