Perthes - What are the effects of the Disease into Adulthood?
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- Опубликовано: 23 июл 2024
- Perthes disease or Legg-Calve-Perthes disease as it is sometimes known, is a rare childhood condition that affects the hip. The blood supply to the hip bone is disrupted, causing bone cells to die, which erodes the hip and causes pain in the process.
Perthes is approximately 4 times as common in boys as girls and generally occurs between 4 and 8 years of age. Active children tend to be more affected. The first symptom is usually a painless limp, but symptoms can be very subtle, with a mild ache in the thigh or knee not being uncommon.
Unfortunately medical agreement on the best way to treat Perthes has not yet been reached. It is treated in various ways but pain management remains a key issues faced by many children. At times, parents are told to "wait and see" to enable the doctors to assess how to best treat their child's condition.
As the condition is not well known, it could occur that the child is not correctly diagnosed with Perthes disease leaving the hip to erode resulting in an odd shape. The effects of Perthes into adulthood are still very much unknown. Doctors have very limited information on how many adults require a hip replacement (if any) and if the disease has had long term consequences on their daily activities.
This webinar aims to address key questions raised by parents, carers and adults affected by Perthes Disease.
Panelists: Nigel Keily, Consultant Orthopaedic Surgeon at
The Robert Jones and Agnes Hunt Orthopaedic Hospital, United Kingdom and Loredana Guetg-Wyatt, CEO of Steps Worldwide.
Nigel graduated from Nottingham University Medical School in 1991. After house jobs in Nottingham, he worked in Leeds then Manchester. He undertook Orthopaedic training in Manchester and the North West, finishing with a fellowship in Paediatric Orthopaedics at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry. During this time, he gained a higher Degree in Orthopaedic Engineering from the University of Cardiff.
Nigel has a Children's and Adult Orthopaedic practice. He undertakes surgery at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry.
Im 21 and it actually feels good to not be alone in this
I'm 27 and it's so nice to not feel alone in this. I believe I've suppressed a lot of the mental turmoil living with perthes has caused me. I was 14 when diagnosed and it was the middle of baseball season. Like a lot of you, I have a lifelong limp, can't participate in certain sports and have pain after standing too long. It's hard but doable. I try to stay as healthy as I can and exercise fairly regularly. I pray for all of you and wish you nothing but the best in life. Always listen to your body and do what's best for you. Godspeed!
I'm an adult male with perthes disease (diagnosed at 7yo), to be honest, this disease impacted me more mentally than physically, due to limitations as a child (playing sports, running, jumping even too much bicycle gave me pain...) many times I was sad and I cried. I'm sure my life would be better without this disease.
Same with me, Started primary school later than everyone else, then had to play catchup on lessons. Thought I was stupid as a child because I was not up to speed with the other kids. I missed 2 years of school, so the teachers back in the 60s just thought I was backwards, and the name calling was unbelievable, from teachers and pupils.
@@kevinwilliams8896 Really that was a mistake IMO of doctors in early 90'es which was to isolate kids thinking theyd move less and agravate less the hip, when really all it did was to socially cut off and agravate us even more by weight gain. Im so glad for having met a lady doctor in Angola in later 90ies who disaprooved professors fom Brussels and put me back into light running, (I hate cycling and swimming but got to love running). By the time i was 17 I got a normal life and normal weight. Now in my 30ies and arthretis is a bitch but mind you we all have health problems at one point, just glad that at key age of teenagehood I got to have a normal life.
@@patrickasseau1444 hi Patrick, when I was 10y I got the first hurt at my hips. I needed 5 years to come back from that condition, but at the end I reached because before of that pain I had a perfect life, without any bad feelings. The first year I just kept in bed with a 2 kilos weight pulling my leg down to help the head get enought blood and also to stop crashing it with the pelvis who is a very stong bone. Then I needed one more year using chairwheel. And also 3 more years that I only walked and swam, to give enought time for the recovery of the whole structure of bone and cartilages. Like doctor said at the video, every case is a case. My Xrays doesn't show any disease, but I'm in a kind of painful stage again when my hip get swolled. I really miss my time playing football, running at the beach, swimming, dancing, and the only thing doctors on my city say is to cut off and replace, but I won't give up! Someone has to help us to kick that operation to our 40's/50's y, we are too young for that.
This is so exciting to find others who have had it! I'm a female currently in my mid 50's now and was diagnosed with perthes in the mid 70's. At the time not many Drs had seen it. We lived in Long Beach CA and found a Dr in LA. I've always been active and what some may consider a tomboy. When I was first diagnosed they had be use a Sam Brown belt, which is basically a body harness with a strap running down the back of the effected leg with a hooking mechanism like on the end of a dog leash and then a hoop to latch it to on the back of the shoe that was effected so you would keep your effected leg bent up at the knee and kept there so you used crutches to move but could let your leg down to stand to use the bathroom room or sleep at night. Then I got the double leg casts with the bar in-between. Skateboarding was all the rage at the time and at that age you don't focus on what you can't do, you get Uber focused on finding ways to keep doing what you want to do. I feel horrible for what I put my Mom through . I can't count how many times she caught me sailing down the driveway with a skateboard under each foot or I'd put a stool on one skateboard, hoist myself up on it and if gravity didn't start me rolling my brother would give me a gentle push to get me started. The casts made it so I couldn't escape from my brother anymore when he came to noogie me and I quickly discovered that a well placed hit with one of my crutches between his legs provided me ample time to get away. I can still hear my mom's voice, yelling at me saying my brother was never going to be able to have children because of me.
Yes, perthes sucked, was painful and the worst for me was all the staring of adults and children and kids following me around staring at me. My Mom fought my school into letting me stay there, which they finally agreed contingent that I would not be allowed on the playground so had to spend every recess in the office. Stamped a lot of forms and put lots of stamps on envelopes for the people working in the office for the couple years I was in casts. I was fortunate enough to have a friend in my class who would come accompany me in the office a lot of times. I hated all the Drs appts and hated all the rotating of the hips they did. When they placed me in casts the.very first time there was a man that was brought in that had been in a motorcycle accident and broken most of the bones in his body. They were casting him up in the next area with just a curtain between us. Hearing the horrible noises and moaning coming from him while the people working on him chatted with light banter as they worked FREAKED ME OUT AND SCARED ME TO DEATH! If getting casts hurt so bad it made you sound like that, I DIDNT WANT THEM!! We had a Volkswagen bug at the time and when we got back to the car my folks ended up picking me up and trying every which way to fit me into the car. After the 5th or 6th attempt they said jokingly, although I didn't realize it, that they would just have to tie to the top of the car to get me home. I started crying and then my Mom whom Is never seen cry EXCEPT FOR This time started crying which scares me so bad I cried even harder. Passersby kept stopping thinking that my parents were being abusive, it was traumatic all around. Now it makes me laugh. I did everything they told me not to. I ended up having to get the bar between my legs switched to metal because I kept breaking it. I spent a couple years in casts (ohhh the pure sweetness when the casts would be removed and you could ITCH YOUR LEGS AGAIN!!) and continued doing everything and anything I wanted. Ran, jumped, played soccer, did everything a normal kid would do. I've gone through periods where my hip is more sore then others and when I was in my late teens, early twenties took naproxen for awhile until I started finding blood when Id go to the bathroom so stopped. Occasionally will take aspirin, Tylenol or ibuprofen if it's really bad and definitely makes the winter months not as fun. Haven't had any hip replacement surgeries which they told me I'd likely need as an adult so I'm very grateful for that. The thought of skiing instantly makes me want to vomit. 😂
I'm curious, how did others get around with casts if they had them? I kinda windmilled my legs one side at a time. I'd love to hear stories about other people's experiences with it. I've never met anybody else whose had it. Guess I gave my excitement away with my long monologue! I apologize!
Coming from someone who is in his 20s and has perthes disease it affects you mentally but also physically heavily because you can't hardly do anything like most people can do such as: ride bikes, jump, or athletic. It's the limitation which makes you feel worthless from time to time. The majority of the people around you barely know the condition including doctors. It's exhausting to explain what perthes disease is to them and try to get them to understand it's something that can't be fixed in adults unless you want to go through another surgery or hip replacement. Fact you have to walk with a limp even if you try to correct your posture and do PT is the most annoying part because you're constantly in pain every single day unless you get steroids' or over the counter pain meds to help you a bit. Sometimes I wish I could just be normal because the limitation biologically like height and weight deeply affects me due to this disease. It's not hard to understand how it affects you when you have it for almost majority of your life.
Thank you everybody that took the time to comment on this video love reading all the comments. And also knowing im not alone. Physically and mentally it affected me I could no longer play football or do anything that I loved to do when i was a kid. I grew up hating the world beacuse of this diesease. My parents would always tell me god gives his strongest children the toughest task. Im 25 now mentally im okay just not so good physically. I hope everyone finds peace and happiness and just know you are not alone.
I had Perthes as a child and now as an adult I can tell you it is debilitating and terribly frustrating. We have a 23 acre farm and I can barely manage the place without being in terrible pain the entire time. Life changing disease.
Mine got found late when I was 18 I'm now 35 I cannot remember a day where I wasn't aching all in pain have the most severe case stop all my doctors have come across this is the most beneficial information I have ever had in 15 years dealing with this
I had perthes when I was 7. This video has really helped me understand more about it and what I can do in the future. It does affect me mentally as I love sport and exercise but it does limit me.
Wonderful and thoroughly given information from the doctor
Very good information thank you 😊 👍
Im so sorry you are going through that and dealing with that much pain!! I've been fortunate. The pain is so hard to describe to someone who hasnt experienced it. For me its like an instant connection to my stomach and makes me nauseous. The worst is if something or someone hits the leg when Im not standing on it. If Im standing with my weight on my other leg or sitting with my knees up and something yanks or hits my leg....shiver. It makes you very protective of your hip, consciously and unconsciously. I came to realize a lot of the ways I go about doing things or positioning myself was to lower the chances of it getting hit or moved. Camping is pure hell so I dont even try that anymore, sleepovers as a kid in sleeping bags on the floor was excruciating and winters arent much fun. Im in my 50's now and while I did go through periods when I was younger when the pain level got intense it seems to have mellowed a bit. I know its there and winter usually there's a low dull ache half the time. I think the hardest is trying to find a comfortable position when its hurting because there isnt one so you never get really good sleep. I hope that the pain you feel now lessens in time like mine did. I havent had to have my hip replaced. My leg is a tiny bit shorter then my other leg but Im 5'6 so as a woman, I dont think Id be considered short like they say people who have had it tend to be. Just know, YOU ARENT ALONE!! I cant express how exciting this is to find other people who have had it!!
Wow, i am one of the unlucky ones who got both. I'm 34, and life just sucks. The left hip was replaced due to the dysplasia 5 years ago, and I'm going to find out in a couple of weeks how the other side is going.
I have to admit, despite my efforts to maintain active and mobile, the pain has begun to increase over the last 12 months or so. It feels nice to know exactly what it is, roughly where I'm at, and that others have this, too.
I was diagnosed with perthese at the age of 3. I had an 'A' frame plaster on my legs for around 3 years. As there was no real improvement it was decided that the plaster should come off. Luckily I didn't suffer from any pain after that and managed to play football at a good level, generally enjoying life and being a kid. As I have got older I had moments where I would get the aching or stiffness or even locking up which would last a day or two. Now nearly 40 and pain is daily, it's always difficult o describe the pains. I always refer to a cycle of pain. Different types of pain on different days. It really does affect my quality of life these days so in a few weeks time. I'm having a full hip replacement. It's good to see other people that have had it or still suffer from it. I don't think I've ever met anyone else who's had the same thing.
I'm just looking for anyone with some info. I am 33 years old. I have been in the army as an infantryman for 12 years. I have run marathons, competed in MMA, done 12 mile rucks marches with heavy packs, I played football until I was 18, ran track, wrestled, and competed in wrestling and jiu jitus. During ALL of these I always noticed something in my hip but just thought it was a normal part of life. Especially once I got in the army, everyone complained of hip pain and back pain. Until about a year and a half ago the pain has gradually gotten worse. At 33 years old, I was diagnosed with perthes disease. I was in the middle of becoming a pilot in the army when my physical came back with the results. Now I'm looking at being medically retired(which i don't want). I guess I'm looking to see if anyone else has had a late diagnosis and how they handled it or what happened with them. I was diagnosed just a month ago.
Had legg perthes when I was 6yo. Played hockey and have been active most my life. Since my late teens have had SI joint and lower back issues that always restrict me from doing sports. Hip pain and nerve numbness down my leg is more prominent the older I get though.
29 here, got a total hip replacement at 19 and was ok for like 3 years. The past 5 years at least have been hell. Insane constant pain that no drug can numb is extremely tiring. I have a difficult depression diagnosis mostly due to pain, even went through a suicide attempt. I'm having difficulties getting disability aid due to it "only being pain" which pushes my already low lease on life lower. I have difficulties sleeping more than 3 hours a night, even with drugs I use to knock me out every night. If it wasn't for my wife or my pets, I'd be long gone.
The pain has returned in the form of Osteoarthritis for me. Employment has become an issue, I can't do the job I trained for, and employers don't want employees with what seems like a serious medical issue. I need to be very careful what job I do, if I can actually get a job, which so far I haven't managed to do. I have applied for Total and Permanent Disability through my Superannuation fund, which is a long, complicated process, and not having worked I haven't been contributing to the fund, so they'll probably reject my claim on a technicality. I am also investing in Orthotics for my feet, which I should have done years ago. My leg length difference, 2 cm, has put pressure on other body areas - my Podiatrist said my body is out of alignment in 3 planes. I can't exercise very much so have also put on weight, which isn't good, extra weight puts more pressure on your joints. Oh and my Father smoked like a chimney when I was first diagnosed. I did use to ride to work when I was working, then I got hit by a car, fortunately not on my Perthes side. Pretty much the worst thing that could happen, short of being killed, so I rarely ride now.
Great information. It's hard to find out more about how perthes affects you later on in life.
I had perthese in both hips i am 55 years of age now i had it when i was 7 since i had over the last 10 years ive had arthritas in both hips my knee and my lower spine i had a hip replacement 4 years ago on my left hip im on the list to get my right knee replaced and will eventually need my right hip replaced one of my legs was shorter than the other and i think that that was the reason of my arthritas when i got my left hip replaced they had to do it twice because the shape of my bone and replacement hip couldnt fit inside my bone so they had to cut the bone hoping after six months that the two piece of bones would knit together but they didnt so i was brought into hospital again and was in the operation room for 9 hours what they had to do was put in a larger hip replacement and put in nuts and bolts to keep the two pieces of bone together it was a nightmare two years that i went through and im still not finnished i will have to go in for my knee replacement but because of covid i have to wait about 3 years for them to do it so im taking pain killers and just trying to get on with life until my surgery is done
@@albertwilson7793 sorry bro am just 17 and am suffering with this disease am just looking for help
@@daniel-mwesi i hope you get the help you need i really did suffer much right up untill i was in my late 40s then my left hip got worse you are still a young lad if you can get it sorted now when your young you could go years without not having to get surgery i wish you all the best in your life and dont have to suffer any pain all the best for the future and and god bless
@@daniel-mwesi i am 23 and i dont know what to do. One burning question for me is; what exactly is the cause of the hip pain! Get your hips x-rayed and if the bad hip bone has now grown to not be a huge issue, maybe physical therapy can seriously improve your pain (i wonder).
27yr old Male, had LCPD when I was 10-11, a little later than most. Had the screws put in and all that. Did 4 years as an infantryman, which involved tons of ruck marching and running all the time. I have since gotten out of the military and spent a lot of time running and training for a marathon. My hip feels great, I forget that I have ever had any issues with my hip and was ever in a wheelchair. I think a sedentary lifestyle is probably much more likely to create issues in your hip than living an active and healthy lifestyle.
Hi Jared, I have to dismiss on what you said. I had a very athletic lifestyle for more than 10 years and anyway, someday I started to feel a little hurt who increased every year. It's true that you have to make sports, because strong muscles will reduce impact at the hips but don't go further, you don't know your limitations and a necrosed head will always be a necrosed head. It's the same when you broke a bone, the replacement isn't strong as the original bone.
Im a 56 y/o woman, diagnosed with Perthes when i was 7 or 8? I wore a leg brace for 2.5 yrs. The doc said it didn't work so i had hip reconstruction. I think it was an osteotemy? When i was in 8th grade
Resulted in leg length discrepancy of an inch. Had to wear shoes with lifts in them. Was teased horribly through grade school when i wore that brace 😢..
.. always in pain, sometimes till im crying its so sore
Want to get a hip replacement because i can barely walk a block without feeling extreme pain. Want to be able to do stuff with my family... recently went on a trip n my kids bought me a used wheelchair to push me around because they wanted me to join them
I had Perthes when I was four. The treatment took quite a long time and I was late starting school. However I made a full recovery. I played sports, joined the army, and did a job that was physically demanding. I am now 68 and recently have just started getting the odd twinge. But on the whole I think Perches didn't impact on my life.
I have it and it looks worse than the flat picture by a long shot. Almost 14 when it showed up one of the oldest cases with this condition. after surgeries I still went on to become a state wrestler. Later amateur MMA fighter. Now older and it's extremely painful 😣 maybe all the contact spots made it worse but I hate limitations. Paying for it now hopefully have surgeries soon.
I had perthes when I was 3yrs , was on traction for 6mth and after that had my leg strapped up for 18mths using crunches. I'm now 59 and have osteoporosis and arthritis and need a full knee replacement and eventually need a hip replacement.
Do you need specialized hip surgeon to replace perthes hips once you are older and there is osteoarthtitis and severe deformities? Being do rare, how do surgeons get sufficient practice?
Diagnosed with legg perthes at age 5. Wore leg brace to immobilize leg for 2 1/2 yrs. Now i am 59 and have severe pain in my rt hip.
Just saw a surgeon at uf health shands who specializes in perthes hips and he told me my case is mild and not ready for hip replacement. My body and lack of sleep due to pain is telling me otherwise. I have had recent dvt to lower rt leg so my case is a little complicated because i cannot take nsaids for pain relief due to being on eliquis. I had 2 hip injections this year which alleviated the pain for about 2 months. Just frustrated because when the pain comes back, my life changes drastically.
I am 58 y o female, diagnosed in left hip, at at 6. I wore a leg brace for 18 months. I now suffer from intense pain in left hip only. I really do not want a hip replacement, but worry there are not many alternatives...
@@lmh8642 I got my hip replaced 1yr ago. Totally pain free and playing pickleball again. I move better than before. Don’t be afraid, get it done and be pain free.
When i was a kid i had perthes and was in hospital for 2 year s . I was put on a frame with my legs badge down from feel to hip s . After that i was walking on calipers for 6 mouth . Then i had to learn how to walk again . I am now in my 70 s the pain is still there , and i walk with a small limp . But i do keep fit which helps
I had surgery at age 8 n now 48, it was called leg perthesis hip disorder, where can I get advice to have a hip replacement
Can it stun growth?
Diagnosed at 10
Hip stabilization surgery shortly after that. Pain led me to a total hip replacement at 39 YO
2 years after the replacement I still have severe pain in front of hip. I have SI joint disfunction and a limp from nerve issues.
I’m getting relief from gabapentin and CBD , tried intense PT, massage,chiropractor, specialist orthopedic Dr.
Nothing lasts long for relief
Very frustrating. Think we need some nerve specialist or something.
Why did the femurs blood supply stop, is the femoral artery and nerve too blame or has it sustained damage?
Did you have a parent that smoked? He mentioned second hand smoke is "associated" with perthes. My dad smoked and I have it. They put 2 pins in my hip. I'm 49 now and havent had a replacement. I just have occasional pain and discomfort. Swimming is the best thing for me. It works the joint without any weight on it and relieves discomfort. I swim every week.
@@thinkblue8089 I tried swimming too. Now I’m having low back problems all the time,going in for an mri tomorrow actually. My mom smoked my whole childhood btw….
@@nicolasburkner7528 you said you were diagnosed at 10. The older it happens the worse the prognosis, unfortunately. I was diagnosed at 8. Do you do regular stretches?
Im 18 and have had it since I was born. The pain has gotten fucking unbearable. Its ruined me. Ruined my life. If this is how I have to live, with it getting worse by the day, then I dont want to live anymore. Its even worse because no one I know understands this level of pain, its so bad, its unbelievable. Id rather get stabbed. Its been making me so suicidal recently. Its ruined all my dreams in life
I hear you mate, I felt the same once.
When I was a young adult, it was at its worse, excruciating pain in my knee especially and my back. To the point I couldn't sleep at all.
I'm 32 now and still limping on, it's no way near as bad as it was! don't get me wrong , I'm awake now because of it, but those nights are way less frequent.
(Usually when the weather changes).
I found daily exercise, stretching and taking vitamins to have helped massively.
Stick with it and stay strong, you're not alone and life has alot to offer you. You may have pain but there are ways to help manage it.
Hope your doin okay . Try yoga and swimming and cycling . I had it when I was younger and found doing both them excercise really help. I don’t have great mobility in my left hip gets sore more when I am less active in fitness
Get into the gym aswell try build the muscle up around your hip
I can so relate to all the pain you are having. I am a female and had it in both hips starting at what I think was age 9. It was very debilitating most of my life. I found that exercise helped me a lot. I am now 62 and have had hip replacements which was the best thing ever. I had my first replacement at age 39. I know you are young but I would find a good surgeon that my have something that could be done to help you.
I had a steroid injection in the hip years ago because I was so young. That did help and eased the pain.