STEPS is the leading charity working for all those whose lives are affected by childhood lower limb conditions
Registered charity in England and Wales (1094343), Scotland (SC049759) and also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number
Our mission is to ensure that anyone affected by a lower limb conditions receives the best standard of treatment, information and support that they need. We bring people together, provide dedicated information and campaign for change.
Our key activities are:
Providing information through publications, helpline and website.
Support through an Internet community and Contact Register.
Education through training programmes and conferences.
Research supporting and commissioning.
Working in partnership to influence change.
Helping people to make an informed choice in healthcare.
DONATE to help Steps reach more people: www.stepsworldwide.org/ways-to-give/donate/
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Siz qanchalar omadlisiz.❤❤❤
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
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.
Thank you for sharing your story. Thank you also for telling us that you have had success with surgery. My THR is 3 months away. I can’t wait.
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.
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.
This disease is not the same for everyone. For some people full recovery can happen spontaneously, while others get a progressive degeneration of neighbour tissues of the Femoral Head causing osteoarthitis. I am 20 years old, and I had to stop playing football at 14. There is nothing, and I mean nothing I can do about it. The Healthcare system in spain did absolutely nothing about it. I visited the hospital a couple of times aged 6 to 9, and they just did "revisions" but no interventions. They considered it good enough, but it was certainly not. So right now, my disease is progressive and chronic. These motivational videos do me the opposite, as there is virtually nothing I can do. I just have to wait until I can barely walk so that public healthcare decides that I deserve a surgery. I think in this case it is important to understand that each case is different. It is a serious disease, and fairy tales about keeping playing football and things like this are not realistic. This can only happen for those that had an early intervention, and a very good follow up after it. Which is less than 1% of the people that have perthes (Having public healthcare and a early good intervention). For the other 99% that have been late diagnosed, or poorly treated (solely because of the resources of where we grew up) this video is not our reality. And those who say, keep going, it will get better! They are probably too young (14 to 25) to experience the degeneration of the disease. If you have perthes, your leg can only get worse. It is the sad reality, and the earlier you realise, the earlier you will be able to cope with it. This disease also comes with differential leg lenght, long term this leads to abnormalities in the spinal chord and severe back pain. It has psychological associations, such as a 50% higher risk of developing ADHD, higher incidence of depression etc. The causes for these are not so clear. The point is, I have always been told that it is not that bad, that its not that serious etc. These shit messages shift away your attention from the disease, and I think it is important to speak the truth sometimes, because if you keep playing football, not taking care of it, and not taking it seriously, you will be limping, struggling to have sex, suffering from back pain, having pain while sitting, not being able to sleep because of the pain... All of this will happen in a blink of an eye. And it is pretty much irreversible until surgery. This being said, it is absolutely possible to cope with these things, you just have to be a bit more cautious than everyone else, and be AWARE. I dont mean to depress yall, i want you to be AWARE. Because I dont want you to be as bad as I am, and I am only 20!!! And trust me I took good care of it. At one point, when disease progression is enough, we will get a hip replacement that will hopefully fix most of our problems. Until then, we have to take good care of it. So dont go around playing football and eating up the pain after, please. Strengthen the Quadriceps and Glutes, with low motion exercises (eliptic, swimming etc.), and take care of yourselves.
I was born with clubfoot in both feet my left leg was very curved but my right leg was completely round I did the operation I feel fear even thinking about when I was a baby but alhamdulillah I am now 10 years old and in my final stages of clubfoot and just imagine every second how life will be after boots i am also playing football my foot doctor told me to wear the boots 23 hours and 30 minutes everyday - ▄▀▄ █░█ ▄▀▄ █▄░█ █▀█ ▀▄▀ █▀█ █░▀█ ▀░▀ ░▀░ ▀░▀ ▀░░▀
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 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 lost a friend to perthes and it’s devastating
Bethan is a brave, tough, easy going girl! I love how she isn't embarrassed about feeling like a baby with that hip cast on! God bless her for her courage and happiness! :D
I was diagnosed in my late 20's after I noticed my knees and hips didn't look even and my gait seemed a little off, and I thought I might have a leg length discrepancy. The dr. figured out right away that something was wrong, did xray and said you have hip dysplasia. But no recommendation as to treatment. I guess I was lucky that I got an immediate diagnosis. I'm 39 now and I still don't have much pain, but I want to start exercising more after being quite sedentary as a former truck driver, and I don't want to injure myself.
I am 68 years old. I was diagnosed at age 60 after I had five previous back surgeries! I was going through my PT after my last back surgery when I learned I had bilateral hip dysplasia. I've been walking with a walker ever since. The specialist I saw at Emory Hospital in Atlanta told me to lose enough weight for the surgery. My left hip is worse. Well, after five years of trying every diet, trying to exercise with limiited mobility, I still can't lose enough weight. I did some recent reading & see now ortho surgeons seem to find that obese people have an increased success rate at hip replacements! I"m hoping I can find one of those surgeons!
Doesn’t affect babies walking. That’s a lie because my daughter has got it and it affects her walking. She needs surgery in the summer.
My baby is 7 month old. Doctor advice the palvik harness. Is it helpful at this age?
Obese and what the hell happened ?
I had Perthes as a child when I was 9 years old and had an operation etc. Today im in my 40's and battling with a stiff hip and regular pain, whats the best exercises? I guess stretches every day?
I am in the same boat. Found out I had this disease in my 20's. I was a professional skateboard/snowboarder and now at 46, this is no fun. Dealing with doctors is a nightmare. Afraid to go back to the doctor.
Как сплеоцно себя ведет. Пусть к него все будет хорошо и ножки были ровненькие
Well 35 yr old an all its done is gotten worse over the year's im disabled because of..an no one wants to do any more surgerys
Зачем ребенку пихать грязные пальцы в рот???
*Promo sm*
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!!
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.
Can it stun growth?
Born with hip dysplasia, leg braces and all when i was a kid.. No one believes me now, all of those Docs are gone.. Cant stand without help most of the time, and can barely walk.. I was born in the early 80's, so no one cares.
My daughter had positional talalapies now she has metatarsus adductus? She also pigeon toes. She got physio as a baby Is this normal?
i’ve been diagnosed for about a year now and i’m still on the waiting list to speak with a surgeon i’m 19 and have high pain hip dysplasia and retroversion too
Thank you for sharing. I was diagnosed with bilateral hip dysplasia when I was 18 months old. I was put in a hip spica immediately but I had to have several surgeries as a child because my deformities were resistant to conservative treatment. I’m now middle aged and I have lived a full life even when my hips developed osteoarthritis in my late thirties. I did retire early from my career as an occupational therapist because of my restricted mobility but I’ve adapted to my disability. It’s interesting that hip spicas and femoral osteotomy are the treatments of choice for developmental hip dysplasia, just as they were when I was treated in the 1960s.
Everyone here getting diagnosed at a young age, meanwhile I just found out I have had this disease at age 20 😭 only my right hip so thats good I guess but I need something to buy that can help loosen my hip and relax it cause its always tight and hurts fr
yeah man read my comment I think it really sums it all up. I was diagnosed young but they did fck-all and now I am in the same place as you... lol
After a few years my grandson has eventually been referred to an orthopedic consultant. I trust you are doing well and thank you for posting your story. This has made us more determined to find the cause of his problem, many thanks.
I had perthes since i was 7 and now i am 15 but i play football it used to hurt but i got threw it but now it fine
Great story . You defo shouldn’t stop . I was diagnosed with it at 8 after year old after years of tellin me it was growing pain . I am now 34 . My left hip mobility is stiff lol but I have completed 2 marathons . Half Ironman. Played football most of my life Best thing I have realised to have less pain is actually keep doing stuff like yoga swimming even running . Building strength up around the hip in the gym . My goal is to complete a full Ironman. Got a third marathon booked for May nxt year . Mibi need a new hip when am 40 but May aswell run this one into ground first 😂
Very best wishes to you! A wonderful paediatrician checked and noticed my son’s dysplasia just after birth. When just 6 weeks he went from a pavlic harness to surgery and a hip spica from ankle to chest. He’s now an active 18yrs with a taekwondo black belt! Fantastic surgeon and test system that needs to be applauded and fully publicised. STEPS helped two novice parents take care of our precious boy, THANK YOU.
What an inspiring story, whilst my grandson is eight, his issue needs the earliest diagnosis possible, we are seeing a consultant shortly. So pleased that you posted the positive outcome for your son
great to see this man fr
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've been diagnosed with hip dysplasia since the age of 5 yrs old I haven't had any pain untill now even when I walk I feel pain at my hips and now I'm 16yrs old may God help us I feel so weak that every move I do hurt 😔
We also found out when he was 7 and he couldn’t get diagnosed. Now he’s 8 and in treatment 😊❤
My son is going through everything you mentioned. From not getting diagnosed, me knowing right away, the pain at night and he even has a younger sibling who rides around with him in his chair! You are SUCH an encouragement to him. It is his dream to return to soccer. Thank you!!!
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.
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.
My heart. Oh my. My son has idiopathic unilateral clubfoot. He has had the best care in our State from birth. But he has an idiopathic case, and it’s recurrent.
Im 21 and it actually feels good to not be alone in this
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.
Great mom salute
Laila is an inspiration for all mums and dads with baby's born with Fibular Hemimelia. To see her standing and walking around so effortlessly quite soon after the op is such a wonderful sight. She is a true little powerhouse as many baby's are, they adapt so well and get on with whatever their health situation, and it must have been difficult to do what had to be done because every bit of her would have meant so much to her mum and dad, but thank God they took the great advice from the doctors and had it done for their daughters well being and independence . God bless !
Brave and strong kids and young people throughout.
The thing that may be difficult to understand is that baby's adapt so well and like that lovely blonde baby at the end of the film get up stand tall and do they're thing no matter what, God bless. Great piece of film for other worried parents suffering these problems with their own baby.
This is great. My kids can usually do the same things other kids can, but there have been times when we couldn’t. My son was born with unilateral clubfoot, and my daughter has severe toe walking. For the most part, they can do everything everyone else can. But there have been seasons with casts and wheelchairs which really opened my eyes to what other families live with all the time. For us, it was just a few months here and there. But those times were unforgettable. My heart is with families who do it full time.
Do babies experience phantom pain? Fo conjoined twins who are separated experience phantom limb pain?