Connective Issues Winter 2019

reSeArCH & progreSS

Another place i’ve seen the impact of research is in orthopedic surgery. Like many with Marfan, i developed severe scoliosis. At the age of 12 i had surgery to fuse all my thoracic vertebrae. This was a major undertaking and i spent more than a year in a body cast, half of that time flat down in bed. in 2013, i needed more surgery—my entire set of lumbar vertebrae needed to be fused, bone spurs on each vertebrae removed, two discs removed, and two vertebrae opened up to widen the channel for my spinal cord. This was a surgery i never wanted to have, yet i needed it to deal with relentless pain from pinched nerves and the bone deterioration going on. This time, there was no body cast involved and they had me stand up the day after surgery. After a few days i transferred to a rehab floor and began physical therapy twice a day, which i hit like rocky getting ready for the big fight. i knew that the more i moved and learned how to work with my newly refurbished body, the faster i’d recover. i learned more about what had changed about fusion surgery in the 40 years since my first surgery. First, the hardware had gotten better; multiple rods that are curved to match the natural curve


researchers at Johns Hopkins Medicine are interested in bullying and cyberbullying (online bullying) in the Marfan population. According to the researchers, bullying and cyberbullying are reported in approximately 21% and 34% of the general population. They are trying to understand if these numbers may be different in those living with Marfan syndrome. Adolescents between the ages of 12–18 years and their parent/ guardian are invited to partici- pate in an online survey about this topic. This survey must be filled out together and in one sitting. The questionnaire involves questions about demo- graphics, bullying, cyberbullying, and resilience scales, as well as an opportunity to give your points of view on this topic. it should take about 20–40 minutes. your answers will be anonymous and confidential (no one will know your personal information or how you answered the questions). you will not get paid for partici- pating in this survey, but at the end you can choose to submit your email address for the chance to win a $25 Amazon gift card. For more information, including how to participate, visit the research section of our website or .

... because of ongoing research, surgical techniques are providing better and better results with less and less burdensome impact.

of the spine were devel- oped. Computer aided imaging let the doctor line up each screw for insertion and show an image of how it would go into the bone

when screwed in. This protected against the

possibility of damage to the spinal cord. one of the surgery team members worked a device to send and receive signals down the spinal cord to monitor for any unex- pected damage to the cord. These kinds of advances let them secure the rods to two screws in every vertebrae, spreading the mechanical stresses across multiple screws and lessening the chance of failure in a screw. All these different bits and pieces came together for my surgery and i benefited from lessons learned about the long-term outcome of those surgeries 40 years ago, advances in materials, and the merging in real-time of x-ray images and computer generated images. what it meant for me was that i had surgery in mid-november and by late december i was decorating my Christmas tree with friends, having already packed away the walker i’d used during recovery and more free of pain than i’d been in a decade. it’s a challenging part of life for those of us with a connective tissue condition. Too often we are faced with needing complex treatments to maintain or restore our health. As someone who’s first surgery happened over 55 years ago, i’d like to leave you with hope that, because of ongoing research, surgical techniques are providing better and better results with less and less burdensome impact. My hope is for you to find a way to support research efforts knowing that it will help ease the life of another, even if it takes a while. “Research is how I help others when I don’t know them or what they need.” – Chris Heaney

Chris Heaney is a former member of the Foundation’s Board of Directors. He currently lives in north Carolina.

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