Current Scoliosis Research
Summary of a recorded Skype discussion
between Martha Carter and Kristen Fay Gorman
This is Part 17 of a serial blog originally titled 'Martha Carter's Healing Journey'. In Part 16, I talk about how utterly confounding scoliosis is as a condition and speak to its many confusing and contradictory aspects, including the fact that it’s entirely ‘unique’ in how it presents and affects every single person. In Part 15, I share a treasure trove of information that’s All About Fusions, alongside my wild experiences with casting, traction, surgery, immobilization, stryker frames, and more, back in the day. Missed the earlier posts? Read Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, Part 10, Part 11, Part 12, Part 13, Part 14 and Part 15.
In my last blog, I detailed the most common surgical procedures used to correct scoliosis. Although advanced technology allows for successful spinal corrections with fusions and rods, I believe that most people would agree that it would be much better if we could stop scoliosis from developing at all!
My friend and scoliosis researcher, Kristen Fay Gorman, says, it’s pretty crazy that so little is known about scoliosis — but then again, there is still much to be known about the human body, on both a genetic and cellular level, so researching scoliosis may actually help unlock all kinds of biological unknowns.
With this in mind, I recently reconnected with Kristen to hear news of her most current (and exciting!) scoliosis research.
In 2009, while preparing for my solo performance show, TWiSTED, I was contacted by a woman from Simon Fraser University in Burnaby, BC, who was working for their new Scoliosis Research Centre. She said that they were interested in my scoliosis story, and would be coming to my show, and she asked, would I be interested in meeting the Research Centre directors, and seeing their lab?
I took them up on their offer!
Shortly after the shows finished, I headed to the university with my filmmaker friend, Clancy Dennehy, who was already at work archiving all my TWiSTED activities. We found the directors, Felix Breden and Kristen Fay Gorman, in a crowded basement lab on the Burnaby campus. Kristen, a scientist from Connecticut, had moved to BC to pursue her PhD in Biology. With the help of her mentor, Felix, she was introduced to the mysteries of scoliosis, and she became fascinated with all the questions. For example, how is it that the condition has been mentioned in literature since the writings of Hippocrates, yet there is still no known cause or cure? And her other driving query — why do so many people get it, and some people’s progress and others don't?
She decided to make scoliosis her PhD thesis with these two main questions in mind.
To enable her explorations in genetic research, Kristen pioneered breeding and testing the small guppy fish, as it turns out that fish are the only known animal who regularly get scoliosis! It also helps that fish and humans share many genetic features, making them very useful research models.
After a short introductory chat, Kristen showed us into a room with dozens of aquariums stacked to the ceiling, each one with hundreds of little guppies swimming around with little curved spines. It was a sight to behold! We laughed at how some of them seemed to swim in circles, thanks to their twisty bodies. Click here to see the video of that visit.
This marked the beginning of an ongoing dialogue around our mutual interest in scoliosis, and learning from each other’s unique perspectives.
Kristen’s guppy research soon piqued the interest of the global research community, so she was subsequently invited to move her lab to the esteemed Scoliosis Research Centre at Hopital Ste-Justine in Montréal. During a trip there, I toured her new lab and met her new research colleagues who were remarkably from all over the world.
Since then, we have continued our dialogue and look forward to working together in the future to present a conference or some other kind of gathering around scoliosis.
It has now been nine years since we met, and although Kristen feels extremely optimistic about the direction of scoliosis research in general, her two main questions are still very present — and she is still very determined to find answers.
I recently caught up with Kristen via Skype from her most current lab at the California State University in Chico, where she is teaching biology while continuing her research.
The following summarizes what she shared with me about the main aspects of her current research, including:
The controversy about casting;
The new field of cellular biology which looks at the relationship between cells and genes;
The fact that she feels very optimistic that research will reach a ‘flash point’ in the next 5-10 years.
It is fascinating to hear her talk, and if you are interested in all the details, you can listen to the entire conversation here.
Here is the summary of what Kristen shared:
Two Main Things
First of all, the two main things that every patient should know are:
1. We don’t know the cause, so if anyone tells you that the cause of scoliosis is known you should be a little bit suspicious.
2. The majority of patients will probably stabilize during adolescence, or even get a little better.
Everyone should keep in mind that the percentage of cases that need to go into surgery are rare. Scoliosis is SO prevalent. The statistic for the average prevalence is 3.5%. It can really go from .5% to 10%. The 10% is the majority of the people who have slight curves whereas the .5% are the ones who really need to get surgerized. That still represents a large number in the global pediatric population but is rare in comparison to the huge numbers of people with this condition.
One of the main controversies is whether or not bracing will work, considering the fact that we cannot forecast who will get a progressive curve and who will not. We still biologically don’t know how to predict someone who is going to get a severe curve versus a not severe curve.
So there is a whole bunch of controversy over whether or not bracing is effective. There have been studies that are pro and con, so there is still debate, but the controversy is that the probability is that the majority of curves stabilize or even get a little better. So how can you conclude that bracing (or any exercise) actually works?
There was a study in Ireland where they tried NOT bracing kids to see if there was a difference. They concluded that there was no difference, but the problem is that no Mom is not going to brace their kid! So it is hard to conduct that kind of study.
There is a lot of fear involved; people are afraid that it will get worse if they don’t do anything.
So these are the two driving questions of my research:
What is the cause?
What makes some kids progress over others?
And we still don’t know. Patients need to keep that in mind for their own empowerment.
Observing the Cells
I think there has been some interesting progress. When I was in Alain Moreau's lab in Montréal, I worked with a great grad student (Niaz Oliazadeh) and we hypothesized that maybe scoliosis starts on a cellular level where cells aren’t able to sense and respond to the biomechanical force around them.
I’ll give you an example: In the work I published with Niaz, we showed that in people with scoliosis, the length of the primary cilium on each cell is longer. The ‘cilia’ is meant for sensing things around the cell, so maybe the fact that it is longer causes it to sense differently? Is it related to the genes that control the cilium? Maybe this is a clue? From here we pursued genes that might be connected to those mechanisms.
This research has been well received; other labs are pursuing the hypothesis now, and it is getting more support from independent laboratories. [Read Kristen and Niaz’s paper here.]
Finding ‘the’ Gene
Researching Scoliosis is still really a new field in cellular biology.
I would say that in some way Idiopathic Scoliosis is helping to define a new understanding of biological mechanisms in general. By understanding scoliosis we will discover more about how our bodies behave.
We know scoliosis has something to do with biomechanics. What we need to understand is how is our posture being regulated on a cellular level?
And how is that cellular regulation of our posture being regulated on a genetic level?
So we are following that thread.
My perspective in doing this research is basic science. And that has always been lacking in scoliosis. It has mostly been clinical, like seeing an orthopedic surgeon; or engineering, where someone is designing the instruments to insert into or to encase your body.
It has only been since 2000 that basic biology has been coming into scoliosis research, and that is causing a shift in our understanding. The ideal is that once we understand the basic biology we can start to integrate this into new approaches therapeutically.
It’s going to take years, but considering scoliosis was first described by Hippocrates 3000 years ago and it’s just in this past century that we are looking at the biology is just amazing! I think we are making good strides. I think the research community will have a flash point soon — I think everyone is really close.
Research Flash point
There have been a large number of scoliosis genetic studies, and they are still not providing the insights we expected. We thought for sure that there would be some big genes popping, but there aren’t.
This is the trail I am going to follow. You find a gene and you say, I am going to pull that thread. What is that gene connected to in the cell? What does it make go in the cell?
Let’s say it affects the cilia, then what does the cilia do? Let’s follow that thread. And oh, the cilia senses biomechanics, so how does that affect your physiology? Let’s follow that thread. And let’s see how that impacts other systems. And then you build out from there.
So if we are trying to understand the biological pathways that lead to scoliosis, it’s got to be huge, because there is not one single gene that has come up yet that explains everything. So it is going to be really big and complicated.
Basically, we still haven’t found the right thread to pull yet.
Everyone is mining like crazy in the research world. They are mining through patients, and comparing the genes of patients versus controls, and we are doing the same thing in fish. I think that all this work IS starting to point to something, it just hasn’t been fully articulated yet. I think it’s going to be a matter of 5-10 years. There’s going to be a big bang, and from that there will be a bunch of innovation.
Nanomedicine (the medical application of nanotechnology) is evolving at the same time. Once we understand scoliosis it won’t be hard to develop innovative therapies and treatment.
What got you started with research?
When we go to school, science is presented as something that’s known, and you are told everything that is ‘known’.
In grad school, you start to develop questions and you start to find out just how much is unknown about the human body! Scoliosis is such a great focal point because actually, there is so little known about human posture and how we maintain our posture.
Sitting upright is amazing. How do we do it? And how come we don’t know that?
And by studying ‘variations in postural strategies’ (ie: scoliosis), we realize it is really very prevalent. I don’t like to think of scoliosis as an abnormality or deformity… really, I would call it just ‘different’. Studying scoliosis is a gateway for us to study posture and the control of posture.
In biology, a lot of our understandings of ourselves as humans comes from the exploration of apparent abnormalities. That is generally how scientists understand things: we compare something that is different with something that seems to be the norm - compare and contrast; see what comes out in the laundry, and that likely explains the difference. Generally, the approach we take with scoliosis is that we have curved fish and normal fish. We look at genes that are different, what cellular mechanisms are different, and we hope that it explains something.
Science is rigid enough that that simple approach will take the rest of my life!
It really is compare and contrast... between scoliosis and not scoliosis.