I was diagnosed with Perthes Disease or Legg-Calve-Perthes Disease aged seven and since then it has impacted on almost every aspect of my life. Not many people know what Perthes Disease is or how it can affect the lives of those who have it, so I have put together a list of basic facts to guide people.
- Perthes Disease affects the head of the femur (highest part of the thigh bone), which is the ball of the hip. Blood supply to the growth plate of the bone becomes limited. Growth plates are the areas of developing tissues at the end of long bones in children and adolescents. The growth plate regulates and helps determine the length and shape of the mature bone. Due to lack of blood the bone at the ball of the hip softens and breaks down.
- Regrowth of the blood vessels will occur over several months, and the blood supply will return to the hip bone. New bone is laid down and the femoral head regrows. It can take several years to regrow. During regrowth the femoral head may be weakened to the point where it collapses leading to a deformed joint surface or even a complete flattening of the head which can lead to a permanent change in the shape of the hip. In my case this led to a less than spherical shape inside a spherical socket.
- In the UK about one in every one thousand children get Perthes Disease. It is most commonly seen between the ages of four and eight years of age. About four boys for every one girl are affected. Roughly twelve percent of cases are bilateral, in both hips. The younger the child when diagnosed the better the chances of a full recovery, especially under the age of five.
- For younger children non-surgical treatment is often the preferred option. Many children are put on crutches to become non or only semi weight baring to help with the pain. Some are given wheelchairs to use for longer distances, but generally crutches are preferred as it keeps the other the muscles in the other leg strong. In most cases the advice is to avoid heavy impact on the hip such as running or jumping. Physical therapy is often used to help maintain a good range of motion within the hip. The exercises tend to focus on hip abduction and rotation. Hydrotherapy and swimming is highly recommended as non weight baring exercise that causes the hip less pain. Traction is sometimes used when lack of motion in the hip has become more of a problem, although this is become a less common treatment. A brace may be used in the most sever cases, with the brace keeping the leg slightly abducted, to keep the femoral head positioned well in the socket. Anti-inflammatory medication such as ibuprofen are used to help regulate the pain in older children.
- Surgical treatment is sometimes used on older children, generally preferred when over the age of six. A tenotomy surgery or tendon release is used to release an atrophied muscle (a decreased muscle) that has shortened due to limping. Once released a cast is applied to allow the muscle to regrow to a more natural length. The cast is usually left on for six to eight weeks. An osteotomy (cutting of the bone) surgery may be done to help realign the femoral head in a more protected position within the hip-joint socket. Occasionally the osteotomy may be done above the hip socket so the hip socket can be repositioned to help the formal head have less chance of becoming deformed.
- A lot of Perthes patients end up with leg-length discrepancy, when one leg is longer than the other. This can be caused due to the effected limb growing slower than the other leg and failing to catch up. By the time I finished growing I had a one and half centimetre discrepancy. This can cause a more server limp and a gait abnormality, changing the way someone walks. This can cause posture issues including lower back pain. Leg-length discrepancy can effect balance, for example I found it very hard to balance on a bike without stabilizers.
- Perthes affects children during growth, once fully grown it is no longer Perthes, but it may have left the hip damaged. Perthes patients are at a higher than average risk of developing osteoarthritis in the hip, often at an earlier age than normal. The more abnormal shape the hip grows back into the more at risk of osteoarthritis the patient is. Older children who get Perthes are also more at risk. Osteoarthritis can be extremely painful, making it painful to bend over or even to walk. If it gets very bad it can hurt almost all of the time including when at rest. In the worst cases this can lead to the need for a total hip replacement, which I had aged twenty-five, being told I had degenerative early onset osteoarthritis.
- Children who have Perthes at a younger age, usually under the age of six are often less at risk of developing problems with the hip in early adulthood, with the hip likely to grow back more rounded and correctly in the socket.
- There is no clear reason why some children get Perthes Disease. It is not due to an injury or blood vessel issue. In some cases it does seem that Perthes runs in families, but there is no clear reason as to why. However it often appears very randomly with no family history at all.
- Legg-Calve-Perthes is named after three physicians who independently described the condition in 1910. There were American Arthur Legg, French man Jacques Calve and German Georg Perthes.
- Dogs also seem to get Perthes Disease, mostly seen in miniature, toy and terrier dogs. They are usually about five to eight months in age when effected. It effects the dogs hind legs.
- In the UK The Perthes Association charity was set up in 1976. It aims to aid research to find a treatment for Perthes Disease and hopefully a cure. They help families with information and advice on the disease. They can also loan equipment such as buggies and hand propelled trikes. http://www.perthes.org.uk/what-do-we-do/ In the USA Perthes Kids Foundation was started in 2007. Its main aim is to raise global awareness of Perthes Disease, further research into it to help find a cure and to help connect and support families effected by it. Link to their Facebook page
There are other various treatments and issues regarding Perthes Disease that I have not covered, so if you are worried about your child and any hip issues they may have, please see your doctor.