Many ultra-runners choose to have a team of crew members and pacers to help them make it through the long miles. Crew members often meet the runner several times during the race and can provide gear, food, and hydration, as well as mental and emotional support along the course. Pacers are individuals who are not running the actual race but who join the runner for sections to help keep the runner safe, on pace, and maybe even provide some entertainment and distraction to help the miles pass. I am beyond blessed to have several friends who I have met through my hip dysplasia journey who are willing to sacrifice time away from work, family, and other life commitments to support me during this adventure. In doing so, they helping to support the International Hip Dysplasia Institute and our greater mission! Please enjoy their stories below about their hip dysplasia journeys and how they continue to move forward.
Shannon and Brent Carroll (Ohio)
Hi, we are Brent and Shannon Carroll from Cincinnati, OH.
Shannon and Nancy met through a mutual friend during her time in Cincinnati. Our friendship started as strictly hip dysplasia talk and quickly blossomed into an incredible friendship. We have supported each other through bilateral PAO’s – tears, laughs, cheers, and everything in between.
I’m a wife, mother of two and fitness lover. I was diagnosed and treated in infancy with the 80’s version of the Pavlik harness, triple cloth diapers. After years of hip, back and lower extremity pain in my teen and young adult years, I went to see a hip preservation surgeon at 32. To my surprise, I was diagnosed with moderate hip dysplasia and hip preservation surgery was suggested. My pain was not a result of years of high impact championship Irish dancing and distance running or “getting older.” I felt a sense of relief. My pain was validated and there was something that could be done to help. After seeking out multiple opinions, I decided to move forward with bilateral hip preservation surgery. This journey has not been linear. I have encountered unexpected bumps that have challenged my faith. At my lowest points, I questioned if the pain would end… if my body would heal… if I made the right decision to have surgery. After 3 years, 6 surgeries, and countless PT appointments, I’m thrilled to share that my hips have never felt better! I made the right decision to have surgery. I am so thankful for my husband, friends (Nancy! and our aupairs) and family that have made these surgeries and recoveries possible.
I’m a husband, Dad, and marathon runner than grew up in Austin, TX. Our daughter Katharine was born in January 2015 via emergency C-section due to her being breech. Standard protocol led us to follow up with an orthopedist to rule out hip dysplasia. During that visit, family history was brought up, and with my wife Shannon having had history with dysplasia dating back to childhood, it led to her also getting evaluated. That is when Shannon was diagnosed (again) with dysplasia at the age of 32, and her first PAO surgery was scheduled (after months of discussions, research, second opinions and prayers) for later that year. As a husband to a PAO warrior, I know it’s an understatedly arduous journey. These past years have been more than trying on Shannon (and secondly, myself). But the support she received from family/extended family/friends has helped guide us through it, and after six surgeries spanning two and a half years, her hips are finally showing signs of recovery, with only one screw/bolt removal surgery on the horizon. By the way, Katharine is great and dysplasia-free, but it’s so fortunate that we made that a appointment!
We are thrilled to support Nancy’s 1st century run to raise awareness and funds for IHDI. Brent, an experienced marathoner, will serve as an overnight pacer, his 1st trail run! He is determined to keep Nancy awake and moving with plenty of Dad jokes. Shannon, a retired runner, will serve as a crew person on the ready with hydration and snacks and gear.
Genn Gibbs (Colorado)
My name is Genn and I am a distance runner with bilateral mild hip dysplasia and excessive femoral anteversion. As a baby, my mom noticed my hips seemed “funny” and my legs rotated in a lot. My pediatrician told her that my hips would be fine and I would grow out of it. I continued to grow and develop without problems, and I began to run in middle school and continued running competitively until my late twenties when I developed mild hip pain—first on my left side, and shortly after, on my right side. My symptoms were mild and inconsistent, and I sought out several opinions from highly regarded hip specialists across the country. While all of the hip specialists agreed that I had bilateral hip dysplasia, there was less agreement as to what was the appropriate course of action—conservative treatments, bilateral scopes, or bilateral PAOs with or without femoral osteotomies. While I am incredibly thankful to currently be pain free with conservative treatments after years of extensive physical therapy and consistent soft tissue work, I am always aware that my luck may run out and I am thankful to have had a swift diagnosis, excellent physical therapy, and a plan of action when my pain returns. I know many others are not as lucky and sometimes go years without a diagnosis or a plan to address their pain. I am also thankful to have connected with other inspiring, persistent, patient, and strong women along the route of my hip dysplasia journey; they have made something very scary easier to accept. While I am no longer running competitively, I am running regularly with a newfound appreciation, and I never take a single step for granted.
Stacey Sarber (Massachusetts)
My name is Stacey and I’m a distance runner (and general outdoor enthusiast) with bilateral hip dysplasia. I started experiencing pain when I was 19, during college cross country season, where I saw an orthopedic who confirmed what we already knew was likely – hip dysplasia. My mothers side of the family has many counts of hip dysplasia – my mom, aunt, grandfather, and great grandmother are/were likewise afflicted. By the time I was diagnosed I had already seen my mom go through bilateral FO’s, a hip replacement, and hip revision. It made the decision for surgery easy for me as I already knew what life would look like if I waited. So at 27 I had an LPAO and hardware removal 5 months later. Initially I was to have both of my hips done but my surgeon decided to hold off on the second, as it was no longer symptomatic after the first surgery. Here I am, now 4 years later, running to my hearts content, having found a great love to hiking along the way, and I’m so thankful for the people that this crazy obsure surgery have brought into my life!
Writing a post-race “race report” is a common practice in ultra-running. These reports serve as entertainment and guides to other runners considering running the race, and I believe they also serve as an outlet for the runner to “process” the experience. I wasn’t planning on writing a race report since 1) it was such an incredible experience that I don’t feel like I can do it justice in words, 2) my brain tends to be mush after races and I usually can’t remember anything between the first and final mile, and 3) I didn’t know if anyone would be interested in reading it. That said, the weekend was so incredible that it would be a shame to not at least try to capture some of it in words (especially while it is still fresh in my mind), and several people have asked me when more details will be available. (Additionally, my body feels great and my hips feel great, but my lungs took the brunt of this adventure and I’m home with a bad head/chest cold and have some downtime to reminisce!) So here goes!
I’ve thought so much about the 100 mile distance for many many years, but my hip dysplasia diagnoses and subsequent surgeries put a damper on my ambitions. I woke up in the recovery room after my second hip scope and PAO surgeries already scheming about my 100 mile race. After going through the same surgeries on my right side and having a better understanding of just how long the recovery process from these surgeries can be, I knew it was going to be a long time to build up my mileage. But I also knew it could be possible. Although I was mentally ready to give my body all the time in the world that it needed to recover from this second round of surgeries, my goal-oriented nature chose the 2 year mark for my 100 miler. I wasn’t going to push my body to do something that it wasn’t ready for, but if I was feeling good, I wanted to make my attempt.
So 1 year, 11 months, and 2 days following my left hip surgeries and exactly 45 months following my right hip surgeries I set off on The Bear 100 course!
But I’ll back up a little from there.
On Wednesday morning I picked up my friend, Genn Gibbs, and we headed to the Denver airport to meet Shannon and Brent Carroll, who were flying in that morning from Cincinnati. Their flight was right on time and we had smooth sailings north to Wyoming.
We spent Wednesday night in Lander with my family. My family has been so incredibly supportive throughout my hip dysplasia diagnoses, surgeries, and recoveries, and they didn’t fail to provide us with the greatest pre-race send-off that evening either. We got there early enough to enjoy a great dinner with my parents, brother-in-law (Mike), sister (Cindy), grandmother, and my dear little niece (Elaina), and spent time visiting their farm animals, taking in a beautiful sunset, and getting a major kick out of the continuous moo-ing from all the neighbors’ cows who just returned to their winter pasture that evening. My Dad joked “I guess the kids will come home when the cows come home!”
Wednesday morning we woke up and had a great diner breakfast in downtown Lander with my parents. We stopped by Cindy and Mike’s house on the way back to my parents to see them and their dogs and get some pictures before heading out.
We got on the road around 10:45 and started heading west. We took some quick photo stops en route, but made it to Logan, Utah around 3 pm.
Stacey Sarber had flown in a few days earlier from Boston to do some running, hiking, and camping in the southwest, so she met us in Logan. We headed to the pre-race check-in and meeting to pick up my race number and leave my drop bags, went out for some Thai food, and then got home to finish preparing and organizing our gear for the race.
Genn injured her ankle a few days before the race, so I was down a pacer. Fortunately Brent and Stacey were both willing to jump in and pick up extra miles. We finalized our race plans with regards to which aid stations my team would be meeting me at along the way and what special gear or nutrition I might need at each stop. I also gave them my very specific instructions about when I would be allowed to quit and when I would not be allowed to quit (I know those lines can become very grey both for runners and for crew/pacers in the overnight hours).
Although several of my crew/pacers had no experience with trail ultra-running, they all stepped right up and were eager to make sure that everything was perfect! And it was!!!
I got to sleep around 10 that night after responding to many well-wishes from friends and family around the country. It felt so amazing going into this race knowing there were so many people around the country – and even around the world – cheering me on and wanting to see this venture be a great success! People kept asking me if I was anxious about the race. Honestly, I wasn’t. I did start to get anxious about it a few weeks before the race and started to question whether I really had trained sufficiently do to this event, but by the time the race rolled around I was more excited than anything. I had spent so much time over the past 4 years no being able to run and seriously questioning if I would ever be able to return to this sport, that just getting to the starting line un-injured felt like an incredible accomplishment!
I woke up around 4:15 the morning of the race and enjoyed coffee and oatmeal in the kitchen while getting revved up for the race. I showed my team a favorite 100 mile motivational speech and we talked about how strongly it parallels PAO surgery and recovery (https://m.youtube.com/watch?v=ocTauMGJD-Y). We also watched one of my other favorite inspirational videos from one of my colleagues and friends, Julie, in Salt Lake City. Julie is a pediatric PT who is a remarkable PT, mother, and wife who runs a theater program for children with special needs. Because she is just an awesome human, her birthday wish this year was to have all of her theater students join her and her family in a city park for a flash mob. Most. Inspirational. Video. EVER! I cry every time I watch it, but it sure gave my morning the kick start it needed! If you ever need to be inspired beyond belief, watch this: https://www.youtube.com/watch?v=L0HGWZ8z0fU
Julie was also amazing and sent me a video of her two year-old running down the road and sharing with me the perfect mantra for this race – “I got it. I. Got. It!” Too fun.
We headed over to the race around 5:15 am. We had plenty of time to park, hit the port-a-potties, chat with folks about hip dysplasia and how we came together as friends and as a team, and to snap a few photos at the start. I didn’t hear an official start to the race (not uncommon in trail running), but suddenly everyone was running, so I decided I better start too!
I forgot my hiking poles at the house, so I decided I was just going to take it really easy for the first 20 miles until I could get them from my crew. I don’t always run with hiking poles, but given the 100 mile distance, my plan had been to start using them on the climbs immediately. Oh well – nothing I could do about it at that point. The race started on roads through a neighborhood for the first mile, but then we hit single track heading into the mountains and everything slowed. I would have liked to go a little faster than the single track train of people was allowing, but I figured it probably wouldn’t help me later to start passing people on the uphill, and I knew it was going to be a LONG uphill.
The Bear 100 course looks kind of like an EKG which is fitting given how many times my heart rate spiked on it. In all fairness, there was a TON of climbing involved in this course (22,518 feet to be exact, with around 70% of that occurring during the first 50 miles!), however the trails were less technical and less steep than many of the trails that I have trained on making me feel strong and confident. And the downhills were pleasantly runnable which allowed me to make up some time. The sun started coming up between miles 3-4. I had sworn to myself that I wasn’t going to stop and take a lot of pictures during the run (I had been warned that this can be a huge time-suck!), but it was too gorgeous to not stop for a few. These are the moments I live for in trail running – the moments when I get to bask in the splendid beauty and glory of the world, removed from all of the trials and imperfections of “real life” (gosh, could I get sappier?) I had some hip dysplasia friends who I was dedicating some of these early miles to, so I set aside time to reflect on their personal journeys and thank them for their support as I continued to head up the hill.
I don’t remember much between miles 10-19, but based on the course map it was almost straight downhill and I do know I enjoyed running most of it. I think I don’t remember a whole lot from this time because I was chatting with quite a few other runners. I ran for a little while with a man from the Denver area who has a child with Down syndrome. We talked about how amazing his son is doing, and I was so humbled by this incredible father who was out on the trails raising awareness for Down syndrome and supporting the Rocky Mountain Down Syndrome Association. I also met a gentleman who is a lawyer in Tennessee. He told me about some of the children and families he has represented in medical malpractice cases. He had a child he represented almost 20 years ago who had an incorrectly-performed surgery at a local hospital. This lawyer reached out to a surgeon at Cincinnati Children’s (where I used to work) to consult on the case and the surgeon actually offered to take on the child. The child’s family didn’t have money to travel to Cincinnati for care, so this lawyer actually ended up transporting this child and his mother to Cincinnati several times per year for many years so that he could be cared for. The young man won the law suit and now has enough money to be comfortable for the rest of his life, but the lawyer remarked that he is a young man of much humility and continues to work hard and serve others in spite of what he has. Nothing like inspirational stories to get you through ultra running miles! As I got close to the 20 mile mark I started chatting with a man from Ogden. He was wearing an Iditarod Trail shirt so I asked him about it. This was his 20th running of The Bear 100 and he had many other 100s to his name. In addition to these he had also run The Iditarod 350 (yes 350 miles!) 6 times (you pull your own sled between aid stations in the snow – whew! Makes The Bear 100 seem like a walk in the park!) and had done the Iditarod 1000 once (25 days and 19 hours to complete!). One of my favorite parts of trail running has always been the interesting people I meet along the way – clearly this race was no exception.
At mile 19(ish) I came running into the Leatham Hollow aid station. I was feeling incredible in spite of not having my hiking poles, and I was excited about seeing my crew team for the first time since 6 am. I had calculated 4 possible time scenarios that would get me to the finish line, based on different minute/mile paces. I had an “Ambitious Time,” a “Highly Decent Time,” a “Cuttin’ It Close Time,” and a “Oh Fudge Time” (this last one would get me to the finish, but only with about 15 minutes to spare!). I was riding my “Ambitious Time” at this point, but I assured my team that it was early in the race and that I was going to slow a lot during the heat of the day and the darkness of the night, and that my “Cuttin-It Close Time” was still probably most accurate. My team was awesome! Stacey helped me get cleaned off and lathered with sunscreen, and Shannon, Brent, and Genn helped me figure out my nutrition/hydration needs. I refilled my water bottles, drank some soda and a chocolate protein shake, had some food (mmmm – pasta salad out of a zip lock baggie!), took some Aleve (prophylactically) and an electrolyte supplement, snagged a few photos with my team, and then got back on the trail. I would be picking Brent up at mile 37 and then seeing the rest of the crew for dinner at mile 45.
I don’t remember a lot between miles 20-37. It was in the heat of the day and I had been nervous that it might be quite warm for long-distance running that afternoon (highs were projected in the low 80s). The parts of the course that were uncovered were toasty and I hit up a stream to splash myself with cold water a few times, but otherwise I don’t remember it being all that bad.
I ran strong into Right Hand Fork Aid Station (approximately mile 38) around 4 pm in the afternoon, and Brent was there to meet me. Barely. I had an even bib number so I wasn’t allowed to have crew at Right Hand Fork (even numbers were allowed crew at mile 45, Temple Fork). My crew team had dropped Brent off at the main road thinking it was about 1/2 mile to the aid station. Turns out it was more like 3 miles! Poor guy sprinted, but you never would have known that! Brent and I have never run together (and actually this was one of Brent’s first trail runs ever – he’s a road marathoner). I felt bad because I definitely started to hit a little lull in my energy level at that time, and the best description I had of Brent was like a puppy being let off leash. He was ready to RUN! It took us a little while to find our groove, but once I perked up a little after a mile or two, we had some really nice running miles through beautiful areas of fields and streams. The late afternoon sun was shining off the mountains and aspens, and it was picturesque!
We came into the Temple Grove aid station at mile 45 around 6:25 pm. I changed my shorts and socks/shoes and ate a lot – I wanted steak and pasta salad (fortunately I had anticipated my cravings and my Mom had sent steak and pasta salad fixings for the journey, and sweet Shannon had them all pulled together and ready for me!). Brent and I made sure we each had a headlamp and we headed out across the street and straight up hill.
This was my only real low-point of the trek and poor Brent rode it out with me. Between stopping for 25 minutes and taking in a lot of food and having been out for about 12 hours already, my stomach was suddenly not having it, and I became nauseous and dizzy. I ended up stopping a few times to sit down on the ground and I kept going between being cold and too hot. But I took some deep breaths and chewed on some Tums, and fortunately the sensation passed and I was able to keep moving forward again and never got sick. The rest of our time together was great! As the sun went down Brent and I got our lights out and enjoyed the noises of the darkening forest. I was running some of these early night miles for friends I have met through the PAO community, so Brent and I took time to talk about them and reflect on their journeys as we passed by towering pine trees and into a clearing where the starry sky showed through for the first time. A few miles before the end of our leg, Brent’s headlamp burned out, so we made it the rest of the way to the aid station cautiously, using just my headlamp. I usually have a few extras on me, but all of my extras were waiting for me in my “night back” which was at the next aid station. Fortunately we made it without any complications and we ran into the Tony Grove aid station at mile 51 around 9:30 pm.
I spent more time at this aid station than I planned (about 25 minutes), but it was an important aid station since it was going to be the last time that I saw our full crew team and truck again until morning and I wanted to make sure I had everything. I changed my shirt, put on a long-sleeve top, and picked up my overnight backpack which had a warmer jacket, extra headlamps, and more food and water in it. Stacey had her hips warmed up and ready to go, and was all set to hit the trails with me for the overnight hours. We exchanged hugs and sent our crew on their way back to the house for a few hours of sleep before the next morning, and Stacey and I took off! This wasn’t Stacey and my first overnight adventure on the trail together. In April 2016 she and I conquered the 76 mile Foothills Trail on the South and North Carolina border with my friend Matt in 29 hours and 29 minutes. We knew the challenges that the night hours could bring, and we were ready to tackle them. Fortunately they never came!
The overnight hours were spectacular! Stacey and I hadn’t seen each other in two years and we had plenty to catch up on! We probably drove the people around us crazy with all of our chatter about cats, work, family, and future life plans, but fortunately those folks were few and far between. The night was cool but definitely comfortable, and even though we didn’t run many of the miles, we held on to some relatively fast times over night, often hitting 15-16 minute miles (this is actually quite quick on the trails – especially over night!) We stopped at each aid station and filled up on fluids and food. I took in a bit of chicken noodle soup when it was offered and also was addicted to the Pepperidge Farms cookies that were served. I had a few tweaks overnight, but none were long-lived. My left hip tweaked briefly around mile 70, but it lasted less than half a mile and I also had some tweaking in my right knee (that knee never bothers me!) that resolved with Aleve at one aid station. I thought I had some blisters on my right heel and left big toe so we stopped in a warming tent at one of the aid stations so that I could change socks and apply some moleskin. I’m still not sure if either was actually a blister, but one of my socks was cold and wet (I had stepped in a creek shortly after we left the Tony Grove aid station) so it didn’t hurt to doctor up the feet a little – and it definitely felt better after! We occasionally shut off our head lamps and stopped moving for a few minutes to stare up at the beautiful, clear, starry sky. A-MA-ZING! I just love being on the trails at night – pure magic!!! Stacey and I looked forward to mile 74 which we were dedicating to a friend’s Mom who had passed away at the age of 74, and this mile was perfectly times with the sun beginning to redden the sky in the distance. We made our way downhill to a road and hiked on in to Beaver Lodge aid station, where our crew was waiting for all with all kinds of goodies!!! I changed my entire outfit, including socks and shoes, refilled my pack, had some coffee and oatmeal, brushed my teeth (thanks to the recommendation of a trail running and PAO friend!), took some pictures, thanked my team immensely for keeping me fueled and in line when they were running on such little sleep themselves, used a real bathroom in the lodge with actual indoor plumbing (so luxurious!), and checked in and out of the aid station. Stacey’s miles were over for a little while, and Brent (God bless him!) was ready to join me for some more!
Brent and I took off from the lodge and immediately headed up a steep ski hill. At the very top we could only find orange flags standing and were very confused, but then Brent found a pink flag that was trampled in the brush. And then another. And then another. He and I ended up roaming around looking for trampled pink flags for quite awhile before acknowledging that we probably weren’t on the right trail and we decided to run back downhill to the lodge and start again. Turns out we should have veered left and stayed on flat ground all along. Brent was frustrated with the course markings and was upset that it had cost us about 25 minutes, but I was still feeling comfortable with our time and assured him that getting off trail is part of the trail running experience (I’m not sure that made him any happier). But at least we were back on course! Fortunately we were able to make up some great time during this section. The trails were dusty, but they were wide and relatively flat for a good part. We hit an aid station in a beautiful field that was serving pancakes. Oh my gosh, I was HAPPY!!!! It was also on this part of the route that we hit the Utah-Idaho state border, which was definitely a picture-worthy moment! This was really happening!!! Brent and I headed uphill a bit and then we were met with miles of glorious, runnable downhill trail! We came to a creek crossing around mile 85, right near the next aid station. I recognized it immediately, and had been dreaming of my photo op at this point for months. When I was in the pre-op area waiting to be taken back to the OR for my first scope/PAO on January 28, 2015, a dear friend of mine texted me a picture of her husband crossing this creek during the Bear 100 and told me “You’ll be doing this in no time!” I went into that PAO optimistic but also realistic that I might never be able to run again, so reaching that point in the race was a major milestone of mine!
(Brent takes full responsibility for the extra hill. And the sideways video footage.):
At this point in the race, another incredible milestone happened! My dear friend (and Brent’s wife), Shannon, got to join me for a few miles. Shannon and I met in the spring of 2015 through a mutual acquaintance when Shannon was re-diagnosed with hip dysplasia as an adult. Shannon’s journey through hip dysplasia has been complicated and she has had to accept many sacrifices along the way, including no longer being able to run. I know this news was devastating to Shannon when she first got it, but she is one of the most incredibly strong and resilient people I have ever met. Shannon is always looking to find and embrace the silver-linings in her circumstances, and knows that she has so much to offer the world. When I watch the 100 mile motivational video I posted above, it makes me think of Shannon 100 times over. She embodies the confidence, resilience, and faith that it takes to survive each and every day, and it is all of this in her that I wanted to draw from during the race. Shannon and I always talked about the day we would be able to run together, but our surgery timelines never coincided well. We won’t run together, but that is the magic of an ultra marathon. As much as it is a “running” event, the keys to finishing are having the mental fortitude to keep putting one foot in front of the other, and that is something that Shannon and I have both learned to do. Having Shannon by my side to help drive me up the second-to-last big climb of the day (about 3.5 miles of fairly steady uphill!) was such an amazing experience for both of us. We took goofy pictures, talked about our journeys and those of others we know, and basked in the glory of the aspens. At the top of the hill I hugged Shannon and Brent and set off running downhill to get into the final aid station with a comfortable cushion – there was still one very steep and long climb ahead and I wanted plenty of time to hit it. I got to the final aid station (mile 92.5, Ranger Dip) around 1 pm. Genn and Stacey were there to greet me. We made sure I had plenty of nutrition and water for the final stretch and then Stacey (running on very little recovery since the overnight hours!) jumped in with me for the final stretch.
We took off from Ranger Dip and headed straight up hill. As promised, the climb was steeper than the other and a little more technical, but I felt like we made it to the top fairly quickly. My right Achilles tendon had been bothering me for a bit and I knew that the downhill would be way better than the uphill, so I kept digging into the ground with my hiking poles and trying to unload my ankle as much as I could. It worked! I kept waiting to turn the corner and have the climb continue upwards, but it never did. We had reached the highest point of the course and is was primarily downhill from there! And, boy, did Stacey and I enjoy that downhill! Her legs were turning over faster than mine, but even mine were feeling pretty good, and we were sailing downhill past other runners! The trail was smooth and a fairly runnable grade at this point, and we were having a blast!!! We stopped to take some photos as views of Bear Lake (where the race would finish!) started to peek through the trees, but mostly we just ran!!! I had heard from other runners that the final 1-2 miles of downhill during this race were the worst of them all and that in wet weather they could be dicey and cause many runners to slip and slide down at a slow pace. We were fortunately that the weather had been dry, so we had to contend with dusty trails, but no mud. As our downhill running became steeper we kept wondering when this dicey, quad-trashing downhill section would be coming, when all of the sudden it dawned on us that we were probably already well down it. And we were! We hit the road at the base of the trail and were careful to find the pink flags continuing the course to the finish. There was one more short, but steep uphill, and then the rest of the journey was a low-grade downhill trail. Stacey kept asking me to identify the money amount at which I would consider running another 100 miles right there and then. At first it was one million dollars. I decided that it would definitely be worth attempting. When she offered my $137 I thought I might decline. So someplace between $137 and $1 million I might have been tempted!
We popped out on the road about 1.5 miles before the finish line. Stacey’s legs were way perkier than mind and I kept looking down at my watch to find that we were going at a 9:35 pace! I kept telling her we needed to slow down, but she kept saying that she was just following my pace. All of the sudden we could make out a guy in a blue shirt running towards us. Brent! He caught up with us and told us we were less than a 10 minute jog from the finish line. With Brent and Stacey with me, we were flying (8:55 pace at the end of a 100 mile run IS flying!). I kept telling them we were running way to fast (I don’t think I really thought I was ever going to be close to the finish line) so we settled in to a 9:15 pace. We got to the end of the road and Brent kept saying “just turn left and then cross the road at the truck and you’re there!” I couldn’t see anything that looked like a finish line, but I just kept following his directions. I got to the truck he was talking about and turned into a driveway with a field of people on the right. I started running down the driveway with Brent and Stacey right behind me. I saw Shannon and Genn to the side cheering me on and started to get excited. I kept running down the driveway and all of the sudden there were my sister, my niece, my Dad, and my brother-in-law, all there wearing their Miles4Hips shirts and cheering me on. The whole race situation had been surreal until that moment, but all of the sudden I was so overcome with emotion! I ran over to my sister and niece and gave them a big hug and my sister told me “You have to finish!” I almost forgot! I raced down the driveway and across the grass to the finish line in just under 33 hours (my goal had been to finish between 32-34 hours and I finished in 32:59:15 – what can I say? I’m kind of “Type A”). Wow! It was a hard moment to process, but I couldn’t wait to go back and see everyone. Apparently my entire crew/pace team knew that my family was going to be there at the finish line AND that I had the chance to come in under 33 hours which is why Brent and Stacey were pushing me so hard at the end, but I had no idea about any of it. Needless to say, it probably was the greatest moment of my life!
I completed 100 miles! But it was done the only way it could have been done for me – with an incredible support team. My hip dysplasia journey was not a solo journey and neither was this race. Getting here and achieving what we did involved strong support from many players, including my surgeons and their medical teams, my physical therapists, my incredible family and friends, my personal trainers, my colleagues, the amazing folks at the International Hip Dysplasia Institute, and the hip dysplasia and PAO support communities. Because of everyone coming together we were able to raise $5000 for the IHDI to support al of their work! I am beyond humbled and overwhelmed by this experience and am excited to continue to grow the Miles4Hips initiative to promote hip dysplasia awareness, garner support for IHDI as they continue to commit to improving the lives of others living with this condition, and promote movement in all capacities for healthy hips and minds!
When I tell people that I have had multiple surgeries for hip dysplasia I usually get one of the following responses:
“Hip dysplasia? Like dogs get?”
“Is that from all of your running?”
The dog comment has helped earn me sympathy from dog lovers. It even helped me get through my pre-surgery insurance authorization process once. Upon hearing my diagnosis, the woman from my insurance company went on to tell me about her family’s beloved dog with hip dysplasia, Sunshine, who they decided to keep and love in spite of being told that it would be better to euthanize her. Apparently Sunshine lived a long and wonderful life and the woman assured me I would too! (And then she pre-approved my PAO!)
The running comment is definitely a more sensitive one for me. Partly because I am a biased runner who struggles to see beyond the positive attributes of my sport. But also partly because it makes me feel irresponsible for my body and my health. I am willing to accept that running MAY have accelerated my symptoms (I also have a theory about how my running have been protective but I’ll save that for another time). But no – running did not CAUSE my dysplasia. Upon my initial diagnosis my mom once remarked “You know this is probably because of all of your running,” and I shot back “No, this is because your uterus was too cramped!” Neither of us was exclusively right or wrong, but we left it at that.
Many adult hip dysplasia patients who I have talked to have expressed a similar combination of amusement and frustration with the lack of awareness and understanding about hip dysplasia. I’m hoping this post can shed some light.
What is hip dysplasia?
Developmental dysplasia of the hip (DDH) is the most common congenital (meaning it is present at birth) birth abnormality. As many as 10-15% of infants may have early signs of hip instability and as many as 1/100 require treatment. The joint is composed of the head of the femur/thigh bone (“ball”) and the acetabulum (“socket”). In hip dysplasia the “ball and socket” joint is often characterized by a relatively shallow and abnormally-shaped socket that doesn’t fully cover the ball. This causes uneven wear on the joint over time. Left untreated, hip dysplasia is a leading cause of pain, disability, early hip arthritis, and hip joint replacements in people under the age of 50.
What are the risk factors for hip dysplasia?
The cause of hip dysplasia is not yet fully understood, but the greatest risk factors include:
All babies are screened by their pediatricians during well-baby checks, but these screening assessments may result in false negatives, meaning they don’t always pick up on hip dysplasia even if it is present. Although there is some debate about this in the hip dysplasia world, often only babies with positive hip screens or with risk factors such as breech presentation or strong family history have more formal testing using ultrasound or X-ray. (As a first-born female who had been breech for a good part of the third trimester, I wonder if I would have undergone more aggressive screening if I had been born recently instead of the early 80s). There is debate about whether or not all infants should undergo more thorough testing using ultrasound, but there are cost, availability, and skill-related limitations and there is some concern about over-diagnosing and over-treating hips that are immature and not definitively dysplastic.
How is pediatric hip dysplasia treated?
Hip dysplasia in a newborn may present as an unstable hip, a partial dislocated or “subluxed” hip, or may present as a fully dislocated hip. Bracing the hip to support the femoral head in the acetabulum and can be an effective treatment to promote normal hip development when infants are treated before the age of 4 months. Infants and children who do not respond to brace treatment or who are diagnosed too late for bracing often require more aggressive management. This may involve relocation of the hip and casting under anesthesia or surgical muscle and bone cuts to the pelvis and thigh to reorient the joint.
How is adult hip dysplasia treated?
Unfortunately, many people like me have hip dysplasia that is not diagnosed in infancy or early childhood. Symptoms such as pain, limping, and difficulty participating in sports-, household-, and work-related activities may start in adolescents or adulthood. Since the hip joint never formed completely, the acetabulum is often shallow and doesn’t fully cover the head of the femur. Over decades this overload can cause painful tears to the liner of the hip joint (the labrum), can cause arthritic changes at the bone, and puts extra stresses on the ligaments and muscles around the joint. There is currently some research being done to look at non-operative and minimally-invasive surgeries to address some of the symptoms of hip dysplasia, but many people require aggressive surgeries to decrease stresses on the joint.
People like me who are diagnosed in their teenage or earlier adult years and who have a relatively healthy joint without significant arthritic changes may be candidates for joint preservation surgery. This often involves cutting the pelvis and/or femur bones and reorienting them to improve how forces are distributed through the joint. The surgery that I had on both of my hips is the most commonly-performed hip preservation surgery and is called a periacetabular osteotomy, or “PAO.” This surgery involves bone cuts (osteotomies) around (peri) the acetabulum (pelvic socket) to move the position of the acetabulum to better cover the head of the femur. Screws are placed to hold the new alignment while bone healing occurs over the next 6-12 months. PAOs often require 6-12 weeks of limited weight bearing on crutches or a walker, and the rehabilitation process can be up to 6-12 months (or longer!) depending on healing and therapy goals.
For adult patients who already have more than mild hip arthritis when they are diagnosed, a total hip replacement surgery is often recommended. Total hip replacements can provide improved pain and function, but also come at a cost. Technology is improving and total hip replacements are tolerating more activity and lasting longer, but the materials used for the joint components are not as good as the natural joint and can loosen or break down over time. Although revision surgery can be performed, this is usually not recommended more than once in a lifetime, and activity limitations are often recommended to prevent early damage to the joint.
What is the long-term prognosis for hip dysplasia?
For an adult hip dysplasia patient, I have been relatively fortunate in my hip dysplasia journey. I received a correct diagnosis shortly after my symptoms started, had access to a team of experienced hip preservation surgeons to address my joint, had an uncomplicated surgery and recovery period, and have been able to successfully return to my physically active work, daily household activities, and my long-distance running. Some patients seek many medical opinions and receive inaccurate diagnoses over the course of years before getting properly diagnosed. While many patients can return to pain-free daily activities and even to some sports activities, many others continue to struggle with ongoing pain, disability, and complications from hip dysplasia, related surgeries, co-morbidities such as connective tissue disorders, and decades of muscle and movement compensations.
My body since my hip dysplasia diagnosis and surgeries…
Overall my hips feel pretty darn good! I didn’t realize how much daily discomfort and instability I lived with until 6-12 months after my first PAO. How amazing it was to realize what a well-aligned hip was supposed to feel like!!! About four months after my second PAO I flew down to Texas for a conference and it was probably the first time in years that I was truly about to sit comfortably for an extended period of time – I literally wanted to go around and high-five everyone on the plane!!! Life since my PAOs have been filled with that daily liberation of being able to do simple tasks without symptoms!
In spite of the good, however, similar to other adult hip dysplasia patients I know, I do struggle with various degrees of ongoing pain, stiffness, and generalized discomfort – especially up the chain into my spine and sacroiliac joints (where the spine meets the pelvis). This is likely due to a combination of mild generalized joint/ligament laxity, ongoing muscle imbalances, early arthritic changes, and abnormal movements associated with decades of functioning on uneven dysplastic joints. Although my hips are better-aligned to distribute forces through my joint and feel more stable, my hips will never be normal. Since my hips did not have the chance to mold properly when I was a young infant, I will always have dysplasia (basically a name for abnormal shape/structure) in my hip joints. Even with better alignment, my hips will never absorb shocks the way a “normal” hip would. Regular core and hip/pelvic strength and stability training are now a necessary part of my life. When I slack on these even for a week, I pay for it!
Although my hips do feel great the majority of the time, I also admit that I do live with degrees of fear and anxiety about my hips. My hips tolerate an awful lot, but I don’t think that they will last forever. I don’t know just how long they will last and what they can or should tolerate, and the occasional tweaks put me on edge. But I strive to listen to my body, to respect its cues, and, above all else, to enjoy and appreciate how relatively good and strong my hips feel the vast majority of the time. The idea of a total hip replacement used to terrify me, but now I have come to accept it as something that I will likely face at a relatively young age. I’ve heard many positive stories of younger people having hip replacements and the surgical techniques, technology, and materials keep improving; I am optimistic about the direction hip surgery is headed. I have told my surgeon several times that I want to be a good steward of my hip and the opportunities my surgeries have afforded me, but I also don’t want to let fear and anxiety about my hips control my life. As long as they feel good, I am going to enjoy them!
When the concept of using my running to support the International Hip Dysplasia Institute (IHDI) came to my mind, I didn’t know the direction it would take. My initial plan was to train and run this race and see if I could elicit some friends and families to support my cause. But when people in the hip dysplasia community and at the IHDI shared my enthusiasm, my mind started wandering about the possibilities.
Early on the question came up from the team at IHDI: what are you going to call yourself?
I had no clue!
One of the team members proposed the name “PAO Runner.” For a little while I thought it was going to stick, but it just wasn’t right. There were a few reasons I had trouble latching on to it. One was that I have struggled with the identity of being a “runner” since my hip dysplasia diagnosis, and I wasn’t sure I wanted the stress of a name I didn’t know that I could live up to. Another reason was that I didn’t like the idea of being defined by my PAOs. Although the experiences of hip dysplasia and PAO surgery have become a part of my identity, I don’t want them to BE my identity. Finally, even early on, I didn’t want this initiative to be about me. One of the greatest things to come out of these experiences for me has been the people I’ve met. Hip dysplasia affects so many lives, from newborns through adults. I’ve encountered parents of infants being treated with harnesses, casts, and surgeries, children who are undergoing orthopedic surgeries for correction of congenital and acquired hip dysplasias, and adolescents and adults who are managing hip dysplasia through various interventions including conservative management like physical therapy and activity modification and surgical procedures such as hip arthroscopies, various pelvic and femoral osteotomies, and total hip replacements. And it is not just their lives that are affected, but also those of their partners, parents, siblings, children, and friends. I wanted something that was about more than me running a race and that would, instead, relate to many others whose lives have been affected by hip dysplasia.
I sent a few possible names back to the team at IHDI and they chose Miles4Hips. At first it just sounded good. But the more I’ve thought and reflected on it, the more I realize that it was a fateful choice, and I have an incredible appreciation for the vision it holds.
When I think about the “miles” I’ve accumulated for hips, I realized that they go far beyond my running miles. There were the miles I drove and flew to get multiple opinions when I was first diagnosed. There were miles I put in on with an electric scooter around Target a few days after surgery (anything to get out of the house!) There were the miles I crutched through city streets to get to follow-up appointments post-operatively and mental health/fresh air miles I crutched up and down the street by my house in the weeks following surgery. There were many driving miles to and from physical therapy. There were miles biked and miles swum. There were hundreds of hiking miles logged on trails with crutches and hiking poles. There were attempts at running even just a few 100 feet that ended in defeat. There was hope in the first mile run without pain.
Everyone I know who has been affected by hip dysplasia puts on many miles for their hips. There are miles put on in cars, trains, planes, and buses – sometimes hours or days of travel- for consults and surgeries. There are miles logged by parents and spouses and friends driving loved ones to physical therapy and medical appointments. There are miles logged on strollers and crutches and walkers and wheelchairs. There are recovery miles logged in the pool and on the treadmill and on bikes. Some miles are practical, some are dreaded, some are painful, some are expensive, and some are positively liberating.