Perthes’ Disease
Discovering that your child has Perthes’ disease can be overwhelming. Our goal is to offer guidance to help you and your child through their Perthes’ disease journey and provide support along the way.
On this page we have covered:
- What is Perthes’ Disease?
- Why Does it Happen?
- How is Perthes’ Detected?
- Treatment of Perthes’ Disease
- Preparing for Surgery
- Perthes into Adulthood
- Sharing the News
- Support
- Resources
What is Perthes’ Disease?
Perthes’ disease is the shorter name for Legg-Calve-Perthes’ disease (named after three doctors who helped first spot it and treat it). It is a condition that affects children’s hips and affects how well they can move and take part in activities.The large part of your leg, the part above the knee, is called the thigh. Inside the thigh is a long bone called the femur. The top of the femur (the head of the femur) is shaped like a ball, and it fits into the hip in a bony socket in your pelvis (like a ball of ice cream sitting in an ice cream scoop). In Perthes’ disease, there is a problem with the blood supply to the ball of the hip joint, which causes it to become soft and change shape, like the ball of ice cream melting, which means it doesn’t always fit well in the ice cream scoop. Over the course of a three-to-five-year period, the old bone is taken away, and new bone is grown, and shaped by the hip joint.
For more information read our booklet, Perthes’ Disease, A Parent’s Guide.
Why Does it Happen?
We don’t know why children get Perthes’ disease; what we do know is that something causes the blood supply to the head of the femur to be affected.
Typically, children are diagnosed between four and eight years old, but it can happen to children younger or older than that. Perthes’ disease affects more boys than girls. For every five children who have Perthes’ disease, only one of them is a girl.
How is Perthes’ Disease Detected?
There are a few things that might be a sign of Perthes’ disease. The most common signs are that the child walks with a limp, has pain in the leg or has difficulty moving the leg, particularly out to the side.
To find out if it is Perthes’ Disease, the doctor will take an X-ray picture, which is completely painless. The doctor might also do some blood tests to make sure it is not an infection.
Listen to our webinar on Perthes’ disease in childhood and some of the latest research happening in the UK right now.
Treatment of Perthes’ Disease
Perthes’ disease is something that eventually goes away, but this takes between three and five years to get to the ‘healed’ stage of the condition. The aim of any type of treatment is focused on achieving something called ‘containment’. Containment in Perthes’ disease means trying to keep the head of the femur (the ball) ‘contained’ within the pelvis (the socket). This is to help the socket ‘mould’ the shape of the ball as the new bone grows back. Think of the ice cream again; the aim is to keep the ice cream in the scoop so that it can be shaped into a nice round ball.
Treatment for Perthes’ disease is available, and is broken down into two types, both focused on containment.
Surgical containment – an operation where the surgeon will make a cut to either the femur (where the ball is) or socket of the hip joint to put the ball and socket in the best possible position to grow and shape the new bone.
Active containment – in this type of treatment, the child will have physiotherapy input and be given advice and support on how best to manage their Perthes’ disease. This can include stretches and exercises to strengthen the muscles around the hip to try and keep the hip moving well so that the ball stays well within the socket.
Regardless of the treatment type, children with Perthes’ disease are often given advice such as advice on what activity they can or can’t do. In the early stages of Perthes’ disease the ball can be quite soft, so children are often advised to avoid high-impact activities like trampolines and bouncy castles. Pain management includes information about what medicines can help best for pain, and how changing when children take part in certain activities can help with managing pain.
Despite being discovered over 100 years ago, we still don’t know what type of treatment leads to the best outcomes for children with Perthes’ disease. Surgical and active containment approaches are used in the UK and all over the world. At the moment in the UK, there is a research trial called Op NON-STOP which is asking exactly that question. In the Op NON-STOP study, children with Perthes’ disease will have either surgical or active containment treatment and their long-term outcomes will be compared. It is an exciting time for Perthes’ disease, because after this study, it will be known which treatment is best for children with this nasty condition! If your child has recently been diagnosed with Perthes’ disease, you can ask your clinic team about getting involved in the Op NON-STOP study.
Watch Declan’s story from being diagnosed with Perthes’ to becoming a professional football player.
Preparing for Surgery
Steps have made a helpful guide for parents and caregivers for when their child is going into hospital, including information on how to prepare and how to talk to your child.
Steps have also produced a downloadable factsheet – Common Types of Hip Osteotomy Surgery in Children.
Following surgery on the hip, a child may be placed in a Spica Cast. For more information about the use of casting, please download Hip Surgery and Spica Cast Care, a Parent’s Guide.
Steps have also created a Hip Spica Cast Equipment list, based on suggestions from parents, for suitable equipment, such as car seats and buggies, that can be used while your child is using a hip spica cast.
Perthes’ into Adulthood
Once the child has got to the healed stage of the condition, Perthes’ disease is essentially finished, and the child is left with a hip that is hopefully contained i.e. the round ball fits in the socket nicely and they can get on with activities without any issues. This happens for over 50% of children with Perthes’ disease but unfortunately, this is not the case for every child with Perthes’ disease. Many go on to have problems when they’re an older child, or even an adult.
There are treatment options throughout these stages, and these can include more input from physiotherapists, and in some cases, can include surgery to try and change the shape or position of the ball and socket. In very rare cases, this can even be treated using a hip replacement. In any of these cases, your orthopaedic clinical team will be able to discuss this with you.
Perthes Disease – The journey into adulthood
Sharing the News
Children with Perthes’ often face challenges because they may not realizs something is wrong, or they may have difficulties in expressing their needs. When and how you tell close family, friends and other relatives about your child’s condition is a very personal decision which will be impacted by how and when the diagnosis occurred, the individual prognosis for your child and the potential treatments available.
There is no right or wrong way or time to share the news; however, being well informed about the condition and having the opportunity to connect with other parents who can understand what you are feeling will likely help.
Once you do share the news, your relatives and friends will probably want to know how they can support you and your child, so take advantage of the experiences being shared by other parents, to help you feel better equipped to answer such questions and get the support that is right for you.
Support
Steps is here to offer emotional and practical support.
The Steps closed Facebook Group is a friendly and safe way of discussing your worries, sharing tips and finding emotional support. Our Family Contact Service identifies someone else who has been through a similar situation and who’s happy to talk about their experiences, on a one-to-one basis, to offer support.
You can reach out to Steps with your questions, concerns and requests via email info@steps-charity.org.uk or leave a voicemail message on 01925 750271 and one of the team will be in touch.
All our Perthes’ links and related resources can be found below
