Have you heard of Legg Calve Perthes Disease? I hadn’t either until I received my diagnosis. Did you know it affects less than 1% of children? Of those, Perthes disease is more likely to show up in boys than girls, and more often if a relative has it. Despite being a girl with no known relatives with a diagnosis, Perthes showed up for me shortly before my 8th birthday.
In fact, I didn’t know anyone else with Perthes until I switched dentists a few years ago. As he was reading my medical chart, he was like “I have Perthes too!” It was surreal!
So if you’re interested in learning more about Legg Calve Perthes, I’ve given you a lot of detail below about my story of life with this disease. While it was scary and life changing, I’m able to have a mostly “normal” life. Well, I’m trying to anyway!
What is Legg Calve Perthes?
Legg Calve Perthes is a disease you’re born with, but there is no indication of the disease until years later when a child is between 4 and 10 years old. (As far as I know) scientists aren’t sure what triggers it, but the ball at the top of your femur that’s inserted into your hip socket starts to collapse due to loss of blood flow. Once it’s done, it grows back.
The period when your femoral head/ball starts to disintegrate to when it finishes growing back is critical because you don’t want the femur to somehow slip out of the socket (is that even possible?) or grow back all weird shaped. So, there are various treatments out there to help reduce the risk, such as surgeries, casts, braces, etc.
The ball takes more than a year to grow back (it is bone after all), but once it does, that’s it. That’s your new hip and you get to deal with whatever it is for the rest of your life, or until you get a hip replacement.
There are many more scientific explanations, but that’s the crux of what I remember from decades of doctor’s visits and why my activity was restricted immediately. If you want real details, read Johns Hopkins info on Perthes and The Parents’ Guide to Perthes book for an in-depth rundown.
![Parent's Guide to Perthes book cover](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/parents-guide-to-perthes-a.jpg?resize=104%2C160&ssl=1)
When I found out I had Legg Calve Perthes
I was an active kid playing gymnastics, soccer and softball. We used to run a half-mile on Fridays at school and I’d always be one of the firsts to finish.
![girl doing a middle split, pre-Perthes diagnosis](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/before-legg-calve-perthes-disease-split-t.jpg?resize=720%2C720&ssl=1)
![One handed kart wheel, pre-Perthes diagnosis](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/before-legg-calve-perthes-disease-kart-wheel-t.jpg?resize=720%2C720&ssl=1)
I remember asking my parents write a note so I wouldn’t have to run because my hip started to hurt. This progressed to asking them to tie my shoelace because it hurt when I reached for my foot.
It wasn’t until I couldn’t walk up the stairs to go to gymnastics that they decided to get me checked out. That night at the hospital, I got x-rays and they knew something was wrong. We came back the next day to learn I was diagnosed with Legg Calve Perthes disease and life changed for my entire family. I remember my mom crying in the hospital because they had thought I was just trying to get out of running or it was growing pains. The doctor kept saying “her head is dying” without clarifying it was the femoral head!
I remember crying a lot, feeling confused and alone. We had no clue what it is, how I got it or what to do. There was no Google, little literature about it. Most doctors hadn’t even heard of it!
My Treatment for Perthes: Scottish Rite Brace
Immediately, my activities were restricted and I was in a wheelchair/crutches combo for about six months. Life went on. My rollerskating birthday party was changed to a house party (we watched Wayne’s World in my living room) and I passed out Halloween candy to trick or treaters instead of going out myself. I had to ride home from school in a special van to accommodate my wheelchair (sorry sister). At my dad’s office Christmas party, someone taught me how to hold open doors with my crutches so I wouldn’t get squashed when hobbling through.
In the end, we (probably my parents) decided not to go with surgery since it would require at least two surgeries: one to put in screws and a plate and one to take them out. Instead, I was fitted with a Scottish Rite Brace that I wore 24/7 for about a year and a half.
Luckily, mine had no bar between the two legs like others, but it kept my legs at a 90-degree position. This is so when the femur ball grows back, it grows at the correct angle and placement.
![girl hula hooping in a Scottish Rite Brace](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/hula-hooping-in-scottish-rite-brace-t.jpg?resize=720%2C720&ssl=1)
![girl in a Scottish Rite Brace playing putt putt](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/scottish-rite-brace-putt-putt-t.jpg?resize=720%2C720&ssl=1)
![Girl playing piano in a Scottish Rite Brace](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/scottish-rite-brace-piano-t.jpg?resize=720%2C720&ssl=1)
![girl laying on her side in a Scottish Rite Brace](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/scottish-rite-brace-on-side-t.jpg?resize=720%2C720&ssl=1)
Imagine being 8 years old and wobbling like a penguin when you walk. If I rolled onto my side in bed, my leg was sticking straight up in the air. The screws on the sides of my brace snagged everything that the velcro didn’t catch. At school, I tried to play soccer but the ball would go right through my legs so I stopped. Everywhere I went, people stared, both kids and adults. (Adults are the worst because they really should know better!)
I remember sitting inside a lot. Watched a lot of TV. Played on the computer (which turned out quite helpful in my future) or piano. I was able to swim, but who likes swimming in the colder months even if it is indoors? Not me!
But there were some positives. Stirrup pants were around so they didn’t bulk up in my brace. Slip-on Keds meant I didn’t have to tie my shoes. And when I was in a wheelchair, my school let me go to the upper elementary side of the playground because they felt bad I literally couldn’t do anything during recess.
Growing Up with Perthes
One thing a doctor told me is that for every one pound of weight you are, that’s three pounds of pressure on my hip. So my best bet for a good life with Perthes was to keep the weight off. Easier said than done when you’re told not to walk more than 100 yards at a time or carry more than 15 lbs of weight.
After I got my brace off, life mostly returned to normalish. I was a military kid so my entire Perthes diagnosis and treatment happened in one state. Once we moved, Perthes just became something I silently dealt with since not many people knew about it or understood what I went through. I was able to resume with low-impact activities like softball, but never again did gymnastics or soccer. My flexibility would never be the same and I wasn’t allowed to run!
As the years went by, we saw a lot of doctors who would check my range of motion and urge me to lose weight and keep my hips strong. I got a lot of x-rays (shoutout to the technician who took an x-ray of my favorite stuffed animal when I was scared) and remember many drives to the not-so-local children’s hospital.
When my femoral ball grew back, the top was flat. Think of a square in a circle– it doesn’t move that nicely right? So a lot of motion (walking, jumping, standing for long periods of time) and I’d be limping from pain.
Reconstructive Hip Surgery
In high school, the pain got worse. I was a cheerleader, was statistically overweight and probably was way harder on my hip than I should’ve been. The flat femoral ball in the round socket also caused concern that it could slip out due to a bad fit.
So, I got reconstructive hip surgery at John’s Hopkins in Baltimore. They cut off a part of my hip bone to extend the socket and moved down the greater trochanter. I have 4 screws in my hip that will be there forever, but at least I don’t set off metal detectors!
The 8-hour surgery went well. I woke up in a body cast that went from just below my chest to my right ankle and left knee. I was in the hospital for a few days, and then went home in a bumpy (painful) ambulance ride. I had a walker to get around on my left foot and had to turn sideways to go through doors. I was home-schooled.
After 1 month, they cut my right leg cast to my knee, but I still couldn’t sit upright. Someone always had to be home with me to help me get food or really anything. I slept in a hospital bed in our downstairs study. I had to use a bedpan. I stayed up late and slept in as long as I could because I found it made the days go by faster.
Thank God for the invention of AOL AIM and a few good friends and family members who came to visit me because I was otherwise completely cut off from the world. And once again, fashion was on my side: I wore very large pants that snapped all the way up the sides because they fit around my cast.
I left the house twice in two and a half months. Once when a good friend took me to the mall for a few hours. And a second time to go to my sister’s graduation. Only now do I realize how lucky it was that I didn’t have to go to the bathroom during either of those hours-long trips!
![In my body cast at my sister's graduation](https://i0.wp.com/www.momistrying.com/wp-content/uploads/2021/04/perthes-surgery-body-cast-t.jpg?resize=720%2C720&ssl=1)
Perthes, Pregnancy & Kids
With all 3 of my pregnancies, my Legg Calve Perthes reminded me of its presence. The larger the baby grew and the more weight I gained, the worse the pain grew. With each pregnancy, the issues started earlier and earlier to the point where I had horrible sciatica with 5 months left to go with baby #3.
BUT, the hip pain was the worst of it and quickly dissipated in the post-partum phase. What helped me get through each pregnancy:
- Sneakers with arch support (yes, even in the Summer with dresses… eww!)
- Maternity support belt
- Prenatal massages
- Stretching
- Maternity workouts (Squats, lunges and planks!)
During pregnancy, I had to be my own advocate, making sure doctors and nurses knew about my Legg Calve Perthes, especially in the delivery rooms. My limited range of motion didn’t exactly work well with their stirrups and leg positions. However, I was able to have natural births with all 3 kids.
Today, I randomly will have people ask if I’m limping. If I go to pick up my 30 lb. toddler, sometimes my hip “freezes” or locks up and it takes a few seconds for me to be able to move it without pain. Mostly, my goal remains to keep it as strong as possible and lose weight to keep the pressure off of it. Every day, I’m trying!
In the foreseeable future, my only option is to keep my hip as strong as I can; otherwise, the next step is a hip replacement. When I squat, my hips are uneven. When I bike, my Perthes leg is slightly turned out. When I do runners lunge stretches or PiYo, there is a noticeable difference of flexibility from one side to the other. But overall, it’s more of a nuisance than a noticeable disability. Over the past few years, I’ve started running, which has been incredible for me! I’m slow, but I’m running!
Have you heard of Perthes before? If not, was this helpful? If you’re a parent of a child with Perthes or are someone who has Perthes, I’d love to hear about your story too. Please comment below! There are also great Facebook groups and websites out there also.
Thank you for reading!
Molly says
Just wanted to make sure you know what a bad*ss you are. It must be so difficult to cheerlead and do sports with limited range of motion, let alone the mental stress of knowing you need to keep weight down when exercise is uncomfortable or even hurts. Thank you for sharing your story!
Debbie says
It was difficult, but at least I knew what was happening which helped my focus. Especially once the wheelchair and brace were off, I was so thankful to be seemingly “normal” on the outside. I’m so thankful I was able to even get stronger, get better, etc. when so many people don’t have that opportunity. Thank you for your kind words and for reading my story! 🙂
Mandy says
I had perthes when I was 6 or 7 in my right hip. I was in a full length body cast. Had to learn how to sit and walk all over again. I still to this day struggle with it. Where are you located
Debbie says
Wow, it sounds like you went through more with a full length body cast and the rehab! Sending lots of hugs to you, dealing with your daily struggles! <3 Perthes is one of those weird ones where it's not a visible handicap, but it can definitely impact your everyday life. People often can't understand the limitations because it is so hidden. I hope you find some ways to alleviate your struggle!
Vickie says
My grand daughter is 10 and has the feet casts with bar across them. How can she be positioned in bed to relieve pressure from her butt and back. And you are amazing and definitely an inspiration.
Debbie says
So I didn’t have feet casts with the bar but when I was in my body cast after surgery, I had a temporary hospital bed at home that had a hanging triangle over my head. I was able to pull on that to help me reposition myself. But I also only had one side down to my ankle, the other cast was cut off at the knee, so even if she had something to pull on to help her move, I’m not sure that would be much help.
The only other thing I can think of is pillows. I am a side sleeper so being in the brace was awful. I remember stacking pillows near me so I could shove them in between my legs or under one side so I wouldn’t be laying on my back. Sometimes yes, that meant I had a leg sticking up in the air, but it was what I had to do to get comfortable.
Sending lots of strength, hugs and prayers to your granddaughter and family. I hope she finds something that works for her. And comfort knowing that even if it feels like forever until that cast is off, at least there is an end in sight — it will come off one day!
Matthew Smith says
Years ago I remember reading a story in a magazine about a girl who had developed Perthes around age 10, and was given the choice between an operation (which would leave a very long scar) or a year in a Petrie cast with her legs spread with a bar, and she chose the latter. This seems to have been the way it was treated until about 20 years ago, but nowadays that type of cast is only used after surgery, and the same is true of the Scottish Rite brace which was inflicted on children for sometimes years. She was told that if the condition recurred, she would need the operation, but I never found out if that happened or not.
Debbie says
Yup, makes sense. I remember we were given the choice between the operation and cast as well and chose the cast to avoid surgery for as long as possible. It’d be interesting to know how many kids chose the cast. I never saw someone else with it when I had it.
Qeshana s Barkley says
Hello my name is pumpkin and I was born with legg and calve perthes disease. I’m now 40 and I think it’s getting to me now mentally not than ever because everyday is a constant reminder of what my body won’t allow me to do. No one will never understand what I’m going through mentally and physically. I’m always in pain everyday all day. I had my right hip replaced and I had more damaged thigh bone than he seen on MRI so he took more, and it still hurts. Not nearly as bad but it still hurts and that’s because it damages more than just your hip bones. My knee popped out of place numerous times. The first time I fell in broke my foot. Crazy. This last time I had Medial Meniscus Damage and floating Bone Fragments due to it popping out in than back in. Just nice to share sum of my journey. Great to know I’m not alone like I always thought. Makes me so sad that no one will never understand, so I just feel so completely alone. Thank you for sharing your story.
Debbie says
Hey Pumpkin! Thanks for sharing YOUR story. It sounds like Perthes has impacted your life significantly more than mine. You’re definitely not alone though; I’ve heard of many people who have had hip replacements young because of pain from Perthes. Sending so many hugs to you!
Joy says
Thank you for sharing!! As a mom of a newly diagnosed 10 year old, your story gives me encouragement and hope!! Blessings to you and your family!!
Debbie says
Thank you for reading and commenting. I’m so glad to hear that you found this post helpful. It’s the main reason I wrote it.
Best of luck to you and your child. It’s a long, slow road but they are lucky to have you helping them figure it all out. Hugs!
Zooey says
Hello Debbie,
I found you by searching “pregnancy with Perthes.” My husband and I are hoping to have kids and I am very nervous. I had Perthes growing up and had a similar experience to you. However, I have been having pain again recently. I admit I have quite an active lifestyle, so I might need to tone it back a bit, but I’ve never been a big fan of self-limiting. I know I need to work on this. Do you think having a hip replacement is something that would possibly be recommended before having a baby? Did they ever recommend that to you? Also, did the pain make you bed- ridden later on in your pregnancies? I’m, of course, going to a doctor for an opinion, but it’s also great to ask for an opinion from someone who has it and has been through multiple pregnancies.
Thank you so much for writing this! It is so reassuring and inspiring. I always feel a special heart-connection with Perthes people.
Best,
Zooey
Debbie says
Hi Zooey, I’m so glad that you found this post helpful. No, I’ve never had a doctor recommend a hip replacement. They’ve mostly said it is an option for the future if I need it but I should put it off as long as possible. I know that pregnancy and birth puts a lot of strain on your hip, but don’t know how it would impact your body if you have a hip replacement first– a doctor would definitely be the one to ask that to.
I was never bed ridden in any pregnancy, but my hip did hurt a lot, especially with the first (my largest baby). A belly support band and wearing sneakers (with arch support) made all the difference. Plus stretches, prenatal massages and exercise. By my third, I learned doing a lot of squats, planks and such to keep my hips and core strong. Plus, you’ll see on my blog I still continue to do exercises to try to strengthen my hip and body. It’s a never ending process.
Mostly, I just did the best I could with the hip I was dealt. During labor, I couldn’t always move my leg/hip in the ways the doctor wanted, but I was always very up front with them about my hip throughout the pregnancy and specific about my rotation limitations.
Best of luck to you and thanks for reaching out! It’s nice to hear from another perthes survivor 🙂 Hugs!
Kimberly says
My daughter who is 11 was just diagnosed last week. I am of course researching our options and trying to figure out the best way to support her in this new journey we have ahead of us. I can say I found your article / post reassuring. We are learning towards the surgery option where she would be bilateral a-frame casted and plan to continue with our doctor’s treatment plans with a brace following the casting period. We are still gathering up information. We live in Delaware, but having the procedure done at The Children’s Hospital of Philadelphia. Sounds like you may not be that far away from us if your procedure was in Baltimore (if you still live in that surrounding area).
So glad that you have found peace with your journey and were able to live a pretty normalish lifestyle. How blessed to have a family and three beautiful children. Keep the faith!
Debbie says
I’m so glad that you found the post reassuring. I’m sure treatments have improved since I was diagnosed so long ago, but I wish your daughter the best of luck on her journey. I can’t imagine going through this from a parent’s perspective with so many unknowns, but your research and doctors will hopefully lead you to the treatment option that is best for you and your family. Hugs to you and your little lady.