My Life with Legg Calve Perthes Disease

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.

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.

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.

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.

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!