If you or your family have a story to tell, please contact me and I can either place a link to it on this site, or place a brief history here. My aim is to have a variety of stories here, illustrating varying therapy and treatment options for Perthes, so that people can see what decisions were made, why they were made and also how the child or adult is doing now.
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​The following are links to stories/blogs of current perthes kids

Both Alex and Caitlin were diagnosed with bilateral perthes young - Alex at 3 1/2 years old and Caitlin at 5 years old.  Alex was lucky enough to have a very mild case, which only needed restrictions and pain meds.  Caitlin on the other hand had a very severe case requiring traction, petrie casts, bilateral pelvic (Salter) osteotomies and an external fixator.  To find out more about their journeys, the decisions made and why,  please follow the link to 'Brown Family Diary'



Chayse was two years old when diagnosed with LCPD.  It started with a limp, living on a farm we thought he had just twisted his ankle chasing chickens and ducks.The limp got worse as did the pain and when he woke from a nap unable to walk and screaming in pain we rushed him to the ER where xrays were performed.  They told us we needed to take him to a Paediatric Orthopaedic Specialist because they found that his femur looked cracked. Chayse was diagnosed with Perthes in July 2009. Chayse has had two tenotomy's and been casted twice and has had an osteotomy. My wish for Chayse is just for him to be happy.  We have conquered so much together in his short life and Perthes will not stop him from being who he wants to be.  

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The following are stories from adults who had perthes as children

DONNA

I was diagnosed with Perthes in my right hip at 4 1/2 years old. My parents had previously been taking me to a chiropractor, as I had pain behind my right knee and was limping. He told them I had a tilted pelvis, but as he wasn't making any difference with his treatments, they took me to the family doctor.
This was approx 1968 and doctors didn't explain what was happening and why they made the decisions they did. I was admitted to Hutt Hospital for three months of traction. In those days, this consisted of sticky tape wrapped around your legs from thigh to foot and a heavy weight hung off the end of the bed to ease the hip joint apart. Weekly, the nurses would remove the tape and replace it, straight onto the raw flesh. My mum told me she witnessed this only once in the three months I was in hospital and I apparently screamed through the whole procedure.
There was no physio and no relief from the traction at all. Toileting was done on the bed in a pan, washing was a sponge bath done by a nurse who had better things to do. Parents were only allowed to visit between certain hours of the day and for my mum that was a nightmare, as she had my younger sister to look after too and had to get her to our great-grandmothers house, then catch two buses to get to the hospital, so I only saw her a couple of times a week.
When I was finally released from hospital (not long after my 5th birthday), I was fitted with a calliper (brace). This consisted of two metal bars - one ran down the outside of my leg and the other down the inside. There was a large leather cuff arrangement at the top of the calliper that sat around groin level and another one around knee level, both of which had to be tightly laced up. A shoe was attached into the frame with a leather strap tethering it to the bottom, so I wasn't weightbearing. On my left foot, I had the matching shoe, but this one had a bridge-type arrangement under it, so that my pelvis was kept level. I wore this for over a year.
After that was removed, the only physiotherapy I received was being made by my parents to walk up and down the narrow hall in our house. I must have said "I can't" a lot - I was after all only 6 years old - and my resounding memory of that is my father constantly saying "There is no such word as CAN'T!"
No real problems from then on. I wasn't an athletic child, more happy to curl up with a good book than anything. My hip would occasionally lock up or give out under me, but otherwise I got on with growing up, getting married and having a family.
One thing I will say about a Perthes diagnosis today compared to when I was diagnosed, is that you can ask your doctor questions and the choices that are available are more varied, with the parents able to be with their children the entire time they are hospitalised, which I have always taken advantage of. My daughter has had prolonged periods in hospital for the surgeries and I know that when she is an adult, she will remember that I was with her virtually all the time, unlike me whose memories are filled with prolonged absences and missing my parents so much, but that was the way it was then and we have a choice now!
I'm now 44 years old. Approximately 18 months ago, I went to an orthopaedic surgeon, as my hip was progressively getting worse. My femoral head is mushroom-shaped, the femoral neck is shortened and widened from Perthes (hence why I refuse to accept Perthes as a childhood condition, as the damage it wreaks is permanent!). I am to have a hip replacement in the next 12-18 months apparently, although I am researching hip resurfacing procedures 'just in case' my hip isn't really as bad as it looks on the x-rays!!
UPDATE 19th January 2008 : ~
Went to see the surgeon just before xmas and had new xrays done. He compared these to the previous xrays and put me straight on the waiting list for the replacement (no choice about that). He feels that my name could come up in about 6 months for the surgery, but to try and push it out time-wise if I can, which suits me. The big issue is actually getting on the waiting list.
I will apparently be in hospital for 5-7 days, then pretty well out of action for 6 weeks, with approx 3 months in total for recovery (give or take) depending on how well I heal. So, on with the weightloss and swimming, so that I am bearing less weight through the joint and my muscles are stronger, which should all help with recovery.
UPDATE December 2008 : ~
Surgery was booked for 10th December, but I couldn't go through with it. I was going to be released from hospital not long before christmas and would spend my summer holidays recovering from the surgery, with little chance that I would be fully recovered in time to return to work early February 2009. I also wasn't emotionally ready for it, not having accepted the inevitability of it and felt if I went ahead, it was because that is what others wanted, not what I wanted. Surgeon happy to delay surgery and planned another appointment for July 2009 - middle of winter - to see how I feel then.
UPDATE July 2009 : ~
Pain has increased markedly, with my daily use of painkillers increasing to maximum doses most days. Sleep is interrupted regularly too. Pain radiates down either side of my kneecap and regular bouts of cramp in that leg are annoying. Hip has decided to go into spasms on a regular basis, with the most intense ones happening when I am going downstairs, which is potentially really dangerous! Things are falling into place regarding work and support for my family too while I am out of action, so feel this is definitely the right thing to do this time. Just waiting now for a surgery date, but hoping for around October, so that the first six weeks of recovery are over with by christmas, the rest of the three months recovery done over the summer holidays and I can return to work, fit and healthy in the new school year.

UPDATE January 2010 :~ 

Surgery went well although I did wake up during it due to only having a spinal block and twilight medications.  Once the anaesthetist realised I was watching him read the paper, he quickly put me back to sleep.  I did well when I hit recovery and when the specialist visited me in the ward later, I was told that the decision to do the surgery was a good one, with more extensive damage being present than they had seen on the xrays.  I was borderline to needing a transfusion, so got stuck in bed for an extra day on IV fluids and oxygen, but once I was on my feet, I was well and truly ready!
I did get re-admitted to hospital about three weeks out, as when I lay down I was breathless.  There were concerns that I had a blood clot on my lungs, although the CAT Scan didn't show anything, my blood tests showed elevated clotting, which they put down to the way my body was healing.  I had to have abdominal injections of blood thinners for a few days, but quickly went home again and got on with my healing.  Heading back to my job as a teacher aide in February and I'm looking forward to it.  The only issue I really have even now is that pre-surgery my perthes leg was almost an inch shorter than my other leg and post-surgery its nearly half an inch longer.  It has proven to be the hardest part of my recovery as my body adjusted to this.
UPDATE January 2013 :~
I forget I ever had a problem and people who meet me now don't believe that I have had a THR.  Even now, when I'm really tired, I become aware of my leg feeling like its much longer than my good leg and if I overdo things, I get some strong hip spasms that mean I have to get off my feet and relax.  They ease quickly if I do this, so if thats the worst that can be dished up, I'm more than happy!!
At my one year post-surgery checkup my specialist told me that I could expect the prosthesis to last around 30 years!  That was unexpected and very gladly received news.  He also gave me some good advice - my new hip was there to be used, so get out there and use it!!!!



GLORY

I grew up in a family with 3 girls & 1 boy. My brother was the youngest & I was the middle girl. My older sister is just 20 months older than I am. She was limping & had "leg pain" that she complained about when she was 9 or 10. My parents & her doctor thought she had arthritis. I remember my sister & I shared a room & she was crying a lot in bed at night due to her leg pain. We found out later that she had a hip problem, though she was not diagnosed until later.
I lived a normal life health wise, until I started having pain in my right hip around the age of 8 or 9. I thought at first, it was probably nothing & I kept going on with life. However, it started to affect my life more & more & I developed a limp. The limp became noticeable to my parents, though they did not think much of it at first. I started to favor my left hip more but still my limp seemed to get worse & worse & the pain increased. It hurt even when I was sitting or lying down. It was always a dull pain but while on it, I would get a shoot of pain sometimes that would make me feel like I would collapse.
Being a student at school, I wanted to appear normal. I could not understand why some kids would want to limp to look cool (gangster types). I tried hard NOT to limp. Some of the kids made fun of me for limping, saying I must be trying to get attention. I tried harder to walk normally but my hip was not holding up. I definitely had a noticeable increasing limp. Kids started calling me "The Cripple" at school.
Eventually, my mother decided something was wrong. The limp did not "work itself out" & despite my efforts, the way I walked was affected. My mom took me to the doctor, both of us not sure it was even anything. We had no knowledge of joint pain or orthopedic problems and were hoping this leg/hip problem was temporary. The doctor took X-rays of my hips. He could see right away there was damage in my right hip. The femur/femoral head (the bone at the top of your leg-the hip ball) was completely dissolved. My mom was shocked at the X-rays. I was only 9 at this time, but the doctor told my mom that my femoral head was in the condition as if I was an old lady. He knew the condition immediately & told us that I had legg perthes. Legg perthes is a condition in children. For adults, it is called avascular necrosis. I was a child, so they diagnosed it as perthes.
The doctors explained to us that the blood flow to the femoral head was cut off. Therefore, the bone cannot be "fed" & it dies & collapses. Then, it regrows & heals & the blood is restored. So, we were excited to hear it is a temporary condition. BUT when the femoral head grows back & blood is restored, often the femoral head grows back deformed & damaged. We hoped that that would not be the case with my hip. We tried to be hopeful & think the best.
My older sister was also X-rayed since she had hip/leg problems in the past. The doctor concluded that she also had legg perthes, hers in her left hip. Mine was in the right hip. This is unusual because usually legg perthes runs in boys (75%, I have read). Also, some say it does not run in families, though in our family, it seems odd that we both-sisters-came down with the same thing. The doctor said my perthes was much worse than my sister's. I was told that I could never run or jump, even after my femoral head improved.
Since my femoral head was so damaged at this time without blood flow, I was put on crutches. My mom has told me that I was on crutches for anywhere from 4 months, maybe longer. We do not remember the exact time I was on them because it seems so long ago to remember dates. My mom remembers me going so fast on the crutches, because I was a hyper kid. I hated being confined to crutches. Especially when the kids in the neighborhood had snow ball fights. I badly wanted to join in because it looked like so much fun! I could not participate because I could not gather up a snowball & stand to throw at the same time. My crutches needed both hands to hold myself up & to stay off of my right leg/hip. I remember sadly watching the other kids throw snowballs and run while I stood there, 3 legged with my crutches.
I also did not like living in Germany because it was often snowy and icy & it was hard to walk with crutches on the ice. I also knew I could not fall on my fragile hip so I had to be extra careful. The crutches were slippery on the ice, unlike my boots. I had to figure out how to walk safely with 2 crutches & one leg without falling.
We lived in a building on the 4th floor. I had to go up the stairs daily to go down to catch the school bus & then again up the stairs to arrive back home. My mom said I was the fastest stair climber on crutches that she ever saw. She said I went flying in those crutches, lickedy split! Haha. But the kids at school still called me a cripple. That was until I threatened to clobber one of the kids with my crutches. That stopped them teasing me for a while & I never had to act on my threat. I remember one kid tried to trip me while I was walking by on my crutches. Instead of tripping, I used my crutch to step on his foot.
At school, I was constantly told to "stop faking it" by the other kids. They could not understand that someone who looked healthy & did not have an accident could be on crutches for so long. I was called the faker & attention seeker, though all I wanted to do was crawl in a hole & hide.
Using crutches for this long had an impact on my legs. My right leg that I was to remain off of until the damage was over, started wasting away. It was much thinner than my left leg. The difference was the muscle mass. I did not have physical therapy or anything to know how to keep up with it. I just knew it started to look odd, or so I thought. Good thing I wore pants. I hoped no one would notice that my legs were different sizes. My right leg definitely became more weak during this time.
The doctor's office was far from where we lived in Germany. We lived in what we called the German economy. That simply means we did not live on the army base there. We lived among the Germans because my parents thought it would be a unique learning experience. I did have to go to school on the army base though. Also, my doctor was there. It was at least an hour to the army base from where we lived. At the doctor's, they decided I needed to be in a brace. I saw the brace & was horrified. If I was teased by being on crutches, how much more would I be teased in a brace! The thing looked metal and awkward. I begged my mom to please not make me wear it. I cried at the thought of being confined to it. My mom told the doctor we would think about it. I never did get
that brace!
At one point, I was told that I did not have to use crutches anymore. I think they established that the blood flow had started again. But I do not remember details of what the doctor said. I just heard, you can walk again & that sounded like a church choir singing Hallelujah to me! I was dazed like in a dream world. It was music to my ears! This was all so very exciting to me because I wanted so badly to be normal! The first time I tried to walk without crutches was very difficult. My right leg was so weak. I hobbled at first & favored the left leg for a long while after all of this.
Eventually I got stronger & we moved from the place where everyone knew me as a Cripple (thank God for being part of an army family)! From that point on, no one knew of my secret of the time I could not walk...I kept it deep inside me, as my little secret. I rarely, if ever, told anyone about my hip problem for years to follow. I did not want to look like an attention seeker. I could never play sports though. My mom always sent a note for the PE teacher. Kids would ask me why I did not play PE but sat out. I would reply vaguely, because I don't wear dorky outfits (like the PE outfits), haha. One school though (I went to a lot of schools being an army kid) MADE me take PE despite my doctor's note. But since I was limited to not running or jumping due to my damaged femoral head, I was sent to do PE with other kids that had health issues. Some students I had PE with had really serious health issues. Some were in wheelchairs & I realized then that perhaps I had it easy. I figured, these kids like me probably wanted to play sports, too, but had even more limitations. I wanted to cry for them, too. I was the one who looked normal & that puzzled everyone as to why I was there. They often had me lift weights with my arms or something else as long as I was not using that right hip. Most kids in that "special" PE class could not even lift the weights that I did or do many of the things I could do. It gave me a new perspective & helped me to focus on how blessed I truly was. I also knew that those kids could not help their situation. It made me think more about how they felt & I wished I could help them. I tied to smile at them & make friends. Some of them could not even talk, but they seemed to recognize a smile.
My hip bothered me on average about twice a year or if I was too rough with it. I learned how much I could push it & I was always careful with it. I knew my limits. But for the most part, I felt average, though I could never run or play sports. I could swim because swimming does not put pressure on the hip. I enjoyed swimming & bike riding, as they did not put impact on the hip.
I did visit an orthopedic only once as an adult during this time. I was in my late teens or early 20s. I wanted to ask, what I could possibly do to prevent my hip from getting worse or if it still had damage. I was curious & hoping I was improving hip wise & it would never be an issue again. The doctor took X-rays, looked at my hip, & concluded, that my hip was damaged BUT he todl me that I may have some years left with it. This doctor told me that I would need a hip replacement but not until I was older, like him. I studied his face, trying to figure out his age. I knew it was rude to ask a person's age so I never did ask him though I wanted to. I just figured, I am ok for years to come & that makes me happy! The doctor said I did have a hip like an 80 year old woman & it would not last. But I did not believe that I would ever need surgery on it. It seemed surreal to me.
I did well with my hip for many years. The hip only started to really act out when I got pregnant which makes sense because when I was a child, they told me to never be overweight as it would add problems to my fragile hip. My mom & I were told when I was a kid, that any weight gain cause put more pressure on the hip which can cause pain & problems. With my firstborn, I was small during the pregnancy. With my second, I was much bigger, the way I carried her & I just seemed to gain more weight. I had a lot of pain during that second pregnancy with my hip. But I lost the baby weight a year or so after my second was born.
My husband did not know about my hip problems until after we were married. This is how good I got at keeping that secret. I never thought to tell him. He went into our marriage not knowing until he asked me to play basketball with him. We had 2 kids by then. I replied, I cannot jump. He looked at me like, "huh?" I told him about my hip problem, surprised I had not told him. This was his intro to my legg perthes issues, though fortunate to me, he still seemed to like me (phew;)
I have heard that women who had perthes as a child are encouraged to have C-sections. I did not know this. I don't think I even told my doctor that I had perthes as a kid (remember, it was my big secret). I delivered both of my babes without a C-section, not knowing the hips are affected in childbirth. So, just a heads up ladies, I had a baby, bad hip & all, without a C-section!! It's possible!
The years went by with just hip pain here & there but nothing life changing. I honestly think it is by God's glory that I was spared for that long from something that was festering just under the surface.
And then I turned 33 1/2 years old. This was when it seemed to change all of the sudden for me, practically overnight. One day I woke up & could not even touch my toe on the ground without excruciating pain throbbing through my whole leg. I was baffled. I realized it was my bad hip side, but why all of the sudden? I hurt so bad, I could hardly walk. I sat in the lazy boy for a week, miserable & afraid to move. I had a hard time driving, moving, or walking. It was awful. We called our church & I got an anointing cloth sent to me. I got to the point, I could walk & the pain was not as intense as it was the week of sitting in the lazy boy chair, but it was still pretty bad. I suffered daily with dull & throbbing pain. Even the shoots of pain started happening again. I was out in public with a friend & a shoot of pain shot up through in my hip & down my leg until I started to fall & I grabbed my friend to be held up so I would not fall. She was confused, not knowing I even had a hip problem. I mumbled something about my hip but kept it general. Here I was going though the hip nightmare, yet again.
I went to my family doctor & he referred me to see the orthopedic surgeon in town. The orthopedic surgeon took X-rays & were shocked at the state of my hip. They thought I had avascular necrosis. I explained I had legg perthes as a kid. They thought my blood flow may be affected again because it looked really bad. I was really worried now & cried & was anointed again. I surely did not want anymore hip damage or lack of blood flow AGAIN!
To make sure they could see fully what was going on, they scheduled me for a MRI. After the MRI, they concluded that my hip was not cutting off the blood flow again, yet this was old damage from the legg perthes from when I was a kid. The X-rays showed my femoral head had a point on it that seemed to be bone on bone grinding with my pelvic bone. No wonder I was in so much pain. I was put on crutches again which I found depressing. I painted my crutches pink & got cute purple pads for the arm handles and the shoulder pads. But I still could not make myself use those crutches much. I got the armpit soreness that I had as a kid also when I was on crutches before. I loathed the crutches.
I decided on a cane that I liked much better. It still helped me stay off of my hip once I learned how to use it.
Adults were nicer than the kids at school that I dealt with at an earlier age. The only comments I got was that I looked like Dr House & I did not mind that. As a side note though, Dr House uses his cane wrong incorrectly-you are suppose to use the cane on the opposite side of the bad leg/hip. I guess that's TV for ya! I painted my cane like a candy cane. I had to make it fun, lest I would cry at not being allowed to walk on my hip again. I asked how long I was suppose to stay off of my hip & the doctor replied, indefinitely. It was a very sad time for me. I had 2 kids & a husband to care for.
This is not what I had in mind!
Even being off of my hip for a while, I still had pain. It hurt to move, to sit & sleeping was impossible. I was miserable, even taking meds for pain relief. Nothing could touch the pain. I also have another painful health issue so this was almost more than I felt I could take. I hobbled around like this for months & suffered with both painful conditions.
Finally, I agreed to get a steroid shot. The doctor told me that it probably would not help. Shots do not help a deformed femoral head/bone, but we would have to try the least invasive things first. So, I agreed. They put a needle deep in my hip bone. I watched it the whole time on the monitor go into between my hip bone & socket (ick). It was not as bad as I thought it would be, but it was not pleasant either. I was hoping the doctor was wrong & that it WOULD somehow help. I was praying for something, anything to spare me from surgery as surgery terrified me! But alas, the steroid shot did nothing for me. Nada.
I was advised by my orthopedic doctor to look into hip replacements. I researched it for a very short time until I was fully grossed out. I could not hear of it or think of it. It was gross to me & looked bloody & violent (hammer & all), as well as I though it was icky & freaky to have a fake hip. Nope, I decided I would suffer & never get that surgery. My husband would say, let's just talk about it & consider it as an option. I would cry & say, NO there's nothing to talk about. I replied, "I AM NOT GETTING THAT AWFUL SURGERY EVER!"
Well, it is amazing what daily awful unrelenting pain can make you consider. After a few months of this, I eventually got to the point, I could look at hip replacement sites & read reviews from others who had had the surgery done. I would still cry about even thinking about it. But I hurt so much, it seemed anything would be better than continuing on the way I was. Also, I longed to walk. I saw people hiking to places & enjoying their legs & it was really starting to upset me that I was limited.
Your brain wants to do things but the body screams "no". It is really frustrating to have your mind work quicker & better than your body that hurts does.
I cried almost daily due to the pain. Sleep was affected & I thought I was starting to go crazy. Finally, at my next orthopedic appointment, I blurted out, "If you do not remove this damaged hip out of me, I may remove it myself!", starting to think I could perform the surgery somehow by myself, in my desperation. The doctor said, "I think you are ready now." I had been praying and praying about His guidance to get the surgery or not & all things pointed to getting it done. I miraculously got insurance during this time that would cover the whole surgery costs when just before this, I did not have insurance.
It seemed God was making a way of escape, even though I hoped I would get better by fiat since I was scared of surgery. But I eventually realized, I had to go down the path He was leading me to & all doors opened to this. The hip replacement was scheduled & I knew if for some reason I improved miraculously before this, I could cancel the surgery. My hip did not improve during the wait for surgery. In fact, I seemed to get worse & I looked forward to the surgery day more & more.
I had my hip replacement done on April 12, 2010. After surgery, I was on a walker for 9 days & then went to the cane again for about 2 months. It took a while for the soreness to dissipate but eventually it has. I still am not allowed to run or jump, but that has been the rules since I was 9 years old. I am used to not being allowed to do those things. Also, now I am not allowed certain positions due to dislocation risks, such as I am not suppose to cross my right (fake hip) leg over my left. I have to cross left over right. Things like that that I am careful to follow.
I don't have any pain unless I over-do something & I know my limits. I have gone roller skating, joined a dance team, walk our dog daily, etc since my hip replacement. I feel like I have the most normal hip I could have while in this flesh & I am soooo thankful for it! I still have to keep weight off always (I am medium size so, so far, so good). I cannot do sports BUT to just walk without pain, to not limp at all, is so wonderful!
My right side is still not as strong as the left & it is a little smaller but no one would notice it, unless I pointed it out. People are shocked when they find out I have had a hip replacement, though I rarely talk of it. It is not something I usually even think about unless I am at the airport because I sometimes set off the metal detectors.
I am told I will need a revision in 20-30 years due to loosening of the fake hip in time. They do not last forever. I worry about this when I think of it, so I choose not to think of it. I will cross that path when it comes. In the meantime, I am enjoying this hip & it is why I had the surgery-to be active & without hip pain.
I hope the best for you all that also have legg perthes. Hopefully you can relate to my story & I hope it encourages some of those who have young kids on crutches that wonder if they will ever have a "normal life". They will have struggles while perthes is affecting them, but it will get better for many years & hopefully they will not have a damaged femoral head. My sister does not have problems now with her perthes, as far as we know. I was the worse case out of the two of us. Still, with me, I had many good years that my hip did not act up.
Hip replacements are scary but they are a life saver when the hip does buckle out & there is no way to get the relief you need. Doctors just want you to wait as long as possible when young to limit how many revisions you will need. The revision surgery is more complicated than the initial hip replacement.
If anyone has any questions about the hip replacements, feel free to look me up on youtube. I have hip videos on there that shows what it is like post op. I am glitteringglory on youtube.
God bless & I hope you, too, will find mobility & healing. 



B. BAKER

​Just sharing for others so they won't be scared of some of the treatments related to perthes disease.
I was one of the few who had to go threw a bilateral case. Both hips were diagnosed with perthes. All this started just after my 6th birthday. Like all kids this age I was super active and tried hard to do the same things my older brother did. I was an early bike rider and by age 6 I was making my brother mad following him around on my bike. I had my fair share of bad wrecks trying to do what other kids did, so I had more bandages on my knees than most from all those falls and I'm sure this had a lot to do with my perthes.
Just as school started I found it hard to run with the other kids. My knees felt like I had rocks in them. The pain got so bad I woke crying many nights. My mother took to me my doctor many times over this and the doctor was sure it was growing pains. Then one day I couldn't walk. So instead of taking me to the doctor as normal my mother took me to an emergency room. That's when they found I had perthes disease in both hips. I remember being taken to a specialist. The doctor at the time was doing a study about perthes and wanted to include me in the study. I know today what it was. I was placed in the long term recumbency study meaning long days in casts to hold my legs spread. The first cast was the most painful but only for a few weeks. I was more scared of pain than really feeling it. I spent 6 weeks in the first set then confined to bed for another week with my legs in traction. The next set of cast spread my legs even more and turned them so I could not stand at all. This was repeated 4 times over 10 months. Each time a little more spread and a little more turn until my feet looked inside down. Things weren't too bad because I had multiple brothers and sisters to help. They pulled me around in a wagon and even took me fishing. Something about casts kept my friends around because once out of the casts and into a brace very few came around to play. I spent another 4 months in a Toronto brace after all the casting. I never learned to walk in the brace until after my 7th birthday. But finally the day came when the brace was gone during the day and I was free. I still had to wear a splint at night to keep my legs spread. It was hard for the next few months just gaining enough strength to walk around at school. But over time I got stronger and better. I still had a little pain at times. Mainly whenever I tried playing sports. In the summer just before my 8th birthday I was given the all clear to do anything I wanted. I grabbed my baseball glove and took off out the door to play all excited. I was able to get on a summer team and made it to the all star team playing first base. I played baseball the next 4 years then started playing golf. Once in high school I started playing football. Perthes may have taken a year of my childhood but it taught me a lot. All though out my life I have always tried to help others. If there is one thing good about perthes I can honestly say most that had it sure are more friendly and thoughtful of others. I managed to have a very normal life. Joined the Arny and worked as a firefighter for a few years after. Managed to get myself into orthopedics for a while and helped a few with perthes.  I have been luckier than most I guess. Even today I am no where near needing hip replacements. My cartilage is thin but hips rounded back out nice. 

So please don't be scared about perthes. It won't kill you and can make you into a stronger person. Hope my story helps others dealing with this.



​FAMOUS PEOPLE​
 

EARL COLE - winner Survivor, Fiji TV show

PLEASE FOLLOW THESE LINKS TO MORE INFORMATION ABOUT EARL ~

Earl Cole - Survivor winner

Earl Cole - Perthes Kids Foundation

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BRUCE McLAREN - racing car driver and founder of McLaren F1 racing team

PLEASE FOLLOW THESE LINKS TO MORE INFORMATION ABOUT BRUCE MCLAREN :~

Bruce McLaren (1937-1970) - Racing car driver diagnosed with perthes at approximately 9 years of age
Bruce McLaren Movie


Perthes Report
extract from Bruce’s letters

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Dated: Surbiton 5 July 1961 – Bruce aged 23, nearly 24

“Now for the big news. I’d been talking about going to see a doc about my leg and what effects it would have on my back etc later on, for quite a while. Graham Hill and Brabham both go to a bloke in Harley Street about their backs, as you know Jack has occasional trouble and Graham is really laid low sometimes with back ache caused by his one shortened and bowed leg. Jack forced the issue by phoning one night and saying I had an appointment next day right after him, so along I went.

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First thing Doctor Turner said was that I would certainly have trouble with my back in 10 years or more if I didn’t do something, then he said do I ever get headaches, I said yes, he said behind the left eye, and as I had the first one I’d had for about six months just then, right there, I said, you’re bloody right! I rather felt he knew what he was talking about then. They are due to the curve of the spine due to the pelvis not being square when I stand.

For his part he said he could give me exercises for the leg which would make it just as strong as the right one and I must, just must wear a built up heel, however he thought it would be advantageous to have an X-ray done just to check on it and then see a colleague of his down the road who was more of an expert on repair work as it were.

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So an X-ray was taken, I had a look at them and was a little shaken, looked like this with the right hand a beaut ball and socket and the left a bit of a tatty old thing, quite a normal Perthes disease recovery according to Dr Turner but it shook me a bit. (drawing inserted here ) So I went down the road to Mr Sheales, Leading Orthopedic surgeon. He first gave me a thorough examination, checked the movements of the leg and had a look at the x-rays and we started talking. Firstly he thought it may have been a slipped hypithythis?? and not a Perthes at all, but to be fair he said the two often come together. All the details would take pages so I’ll only stick to the important bits.

Firstly he said I would certainly get bad arthritis late on (as did McDonald remember?) and would have to have something done about it. Apparently the rough old nob on the end of the left bone will wear through the cartilage and establish bone to bone contact which is arthritis! The fact that the end is a funny shape is what restricts the movement. He was surprised that the muscles were in as good a shape as they are without special exercise. I asked him what his recommendation was. He said they could do all sorts of things now that were not possible 5 years ago, let alone 9. I mentioned that McDonald had said he could lengthen the leg and he then went on from there saying:
(a) he could lengthen the thigh bone but it was a three month job and painful
(b) he could shorten the right leg but wouldn’t because it wasn’t his policy to do meddlesome surgery as he put it and I was already short enough.
(c) None of these jobs would cure my hip joint problem, anyway what he would like to do is put in a steel end like so (drawing inserted of steel ball ended thing in the thigh bone.
This is the idea but probably no where in scale, the holes shown are filled with bone chips from the dud end which is cut so the bone grows thru and around the steel bit. I have heard about this operation so although a bit horrified at the idea, I wasn’t speechless. The details are, three weeks in hospital then 4 or 5 weeks out patient treatment and cost 150 pounds surgery plus extras which would put it up to £270 odd. He said this would be the only thing to do when the arthritis got really bad. He reckons then there would be complete movement equal to the right leg and the only restrictions he would place are ski jumping or parachute jumping, otherwise it would be 100%

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Now I think I mentioned that Dr Frank (Falkner) was over, I hadn’t talked to him before about my hip, heaven knows why, so we got talking and I find of course he probably knows as much about Perthes and slipped hyperthysiss ?? as anyone, illnesses connected with child growth on which I think I’ve told you he is one of the worlds leading child doctors.

He said he had heard that I was going to the Doctor and although he hadn’t had time to say anything had hoped that this suggestion would come up, he said these jobs now are really fantastic and this one even if not 100% would be 100% better than it is at present. I asked him about the dangers of putting bits of steel in and all that, he said nowadays they work under an umbrella of antibiotics – in other words pump you full of everything drug wise a week before so no bacteria has a chance and use a procedure called ‘no touch’ and in general was enthusiastic about the idea. He said to just let him check that Sheales is the best man first. Incidently, Sheales said there was no ruch, 5 or 10 years but Frank, Doc Turner, Pat and I think early next year so I get the advantage of a perfect leg again in my late twenties.

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I know you are going to say “ooh dear” but what do you think, talk it over with McDonald if you like.”

B McL