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My Pain Story- Part One

I have had a very slight worry in the back of my mind for years that one day my posture issues would get a lot worse.  Having had previous issues with my posture in various ways I knew that it was only a matter of time before they would flare up again.  So I kept up my physiotherapy exercises for it even after my previous shoulder and back issues had died down.

Previously in my mid-twenties I had a frozen left shoulder that caused me some real problems for a couple of months or so.  Weekly physiotherapy including the use of an ultrasound machine used for massage helped a great deal, alongside doing daily exercises.  Since then I have been back to physiotherapy for shoulder and neck pain that I wanted to prevent from getting worse. 

However, the exercises only keep the problem at bay for so long before they flare up again.  Now I have major pain down most of my left side.  I have had minor twinges and aches most of my life, but last June was when I noticed things getting significantly worse again.  I was having more than my usual amount of sore hip muscle issues and the pain was a little different to just muscle weakness.   Then when my back became agonisingly painful on my usual walk home from town I knew that something was not right.    

So I booked an appointment with my GP.  She thought it could be the curve in my spine pushing on a nerve sending pain across my left side.  I was told to book with physiotherapy and to come back in if I felt I needed stronger pain medication than over the counter stuff.  Even booking with physiotherapy was easier said than done, with the self-referral system we have in our area, and when I did get an appointment they were so busy it was a wait of almost a month to actually see them.

Meanwhile my pain issues were getting worse.  Not only did my lower back and hip area hurt, but the pain was spreading.  Firstly down my leg to the ankle, then to my shoulder and neck and then my arm and even my left hand started to hurt.  The last straw was when my left hand became so weak I could no longer fully use it without pain.  This was the point I decided I needed stronger pain medication and went back to the doctor.  I was given Gabapentin tablets, which are specifically for nerve pain. 

I eventually had my physiotherapy appointment.  The physio agreed my posture is bad, but was unsure that I actually had scoliosis and was not sure that it was a nerve issue.  She referred me to orthopaedics since I had never actually seen them about my back and posture specifically before.  That meant more waiting for another appointment. 

I knew Gabapentin tablets take a few days to have much effect, but after nearly two weeks I still had no relief from them.  I decided the physiotherapist was probably right and it might not actually be a nerve issue, as the pills do not work on other types of pain.  I managed to get a phone appointment with a GP for different pain killers.  I ended up with prescription strength codeine based medication, which is helping my pain, although not as effectively as I would like.  I also worry slightly about being on them too long as they are an opioid and opioids are seen as quite dangerous to be left on long term. 

By the time I had my orthopaedic appointment it was September.  The orthopaedic specialist confirmed it is definitely not nerve pain and not scoliosis.  He suggested one of my issues could be tennis elbow, which to me sounded a bit odd as my elbow is one of the few places I do not have pain.  He seemed to think I have a series of different things which may be triggering each other.  He told me I have over reactive reflexes, but never told what, if anything, this could mean.  So after a thorough examination from both a physiotherapist and an orthopaedic specialist I was left with tennis elbow and over reacting reflexes, not really all that helpful.   

I was advised to attend the pain clinic.  However to do that I needed a GP referral, which meant waiting two and a half weeks.  What was even more frustrating was when I finally did hear from the pain clinic I had to ring them just to confirm I still wanted an appointment and to pick the hospital I wanted it at, then I was finally put on what I gather is a rather long waiting list to see them.  So I still do not have my appointment with them yet!

Then my right shoulder started to hurt.  I put this down to either sleeping on it badly or over compensating for the left, but the pain did not go away.  When it spread down the arm and to my right hand, with pain exactly like my left side I knew my pain was no longer isolated just to my left.  As frustrating as having a painful and weak left side was, now both sides are bad it makes daily functioning really tricky.  So far my right leg is pain free, and hopefully it will stay that way as my left leg has always been worse due to my hip issue and tends to be more sensitive.

Most recently I went back to physiotherapy as advised by the orthopaedic specialist.  I have been given some wrist and hand exercises to do to try to tackle my possible tennis elbow or whatever it is causing me pain in that area.  So now I do three lots of exercises that I have been given over the years for posture, leg strengthening and now hand and wrist.  If nothing else it could help to keep me functioning somewhat even if the pain is not lessoned.

I am pretty sure my posture issues stem from my hip issue causing me to walk with a limp and rather turned out gait for years and having spent a long time using walking aids in the past.  Perthes Disease might be described by experts as a childhood hip issue, but it has definitely affected more than just my hip and has left me with life-long issues.-

I am still waiting on my pain clinic appointment and will see my GP again next week.  It is all rather a tedious lot of waiting for appointments and so far not much progress, but we will see.  I will be coming back to this topic again when I have more to tell you.

Perthes, Long-Term Effects

‘Perthes is a childhood disorder which affects the head of the femur (the ball of the ball and socket joint of the hip). In Perthes disease the blood supply to the growth plate of the bone at the end of the femur (called the epiphysis) becomes inadequate. As a result the bone softens and breaks down (a process called necrosis). Over several months the blood vessels regrow, and the blood supply returns to the ‘dead’ bone tissue. New bone tissue is then laid down and the femoral head regrows and remodels over several years. This is similar to how bone reforms and remodels after any ‘normal’ fracture or break to a bone, but takes longer,’

(https://www.perthes.org.uk/what-is-perthes-disease/)
As this quote says Perthes is a childhood condition that affects the hip in growth. However, I often come across adults talking in various social media groups as if they still have Perthes and some even swear blind they still do have it. Technically no one can have it as an adult, but you can have the after effects of having had it as a child. The after effects for me where Justas bad as the Perthes itself.


Not everyone who has Perthes will go on to have such bad after effects; some will have very little at all. It is said that the younger someone has Perthes the better the chances of a full recovery with less side effects, particularly those aged under five. I was diagnosed aged seven and my hip never seemed to grow back fully in the right shape or size.


Pain and hip replacement


I almost always had some kind of pain coming from my hip area, be it the hip itself or the weak muscles. The pain did not go away after the Perthes was said to have run its course due to the damaged state the hip was left in. Not all Perthes patients carry on having pain like I did; it depends on how well the hip grows back to its proper shape. In a lot of cases the ball of the hip does not reshape to fit the socket well, which can lead to a faltered ball, creating significant problems later.


It is said that patients who had Perthes are at higher risk than most of having osteoarthritis, one study of sixty people with Perthes put it as high as over fifty pecent and often at a younger age than normal. I was told I was developing the early stages of osteoarthritis in my early twenties. This eventually led to me using crutches on a daily basis as weight bearing on the hip became too painful. Then aged twenty-five I had a total hip replacement.

According to a fairly recent study ‘LCP patients had a significantly higher risk of THR surgery compared to sex- and age-matched control persons’ (https://online.boneandjoint.org.uk/doi/abs/10.1302/0301-620X.92BSUPP_IV.0920594c)

After my hip replacement I had a lot less pain from the hip area, but my muscles were very weak from lack of use over many years. Once I started doing more with the leg the muscles became sore. Pain after Perthes is very common in muscles suddenly being used more than they are used to. I have found physiotherapy very helpful for strengthening my muscles again.


Leg length issues and posture


Leg length discrepancy is common amongst those who had Perthes due to bone growth not being complete or loss of height due to flattening of the head. Also, some surgeries such as femoral varus osteotomy can contribute to leg length discrepancy, making it a now less preferred treatment for some surgeons.


I had a 1.5 cm difference in leg length before my hip replacement which caused me to limp. A long term limp is not good for your posture. I ended up having posture related issues. I had back pain off and on since about the age of eleven, nothing server, but early signs the way I walked was not good. Then in my late teens I started to get neck and shoulder problems which gradually got worse, till one day aged twenty-four I woke up with a frozen shoulder, which took weeks to get back to fully functioning again and still has twinges now and then.


Physiotherapy has helped a lot with my posture issues. Initially several sessions of massage using ultra sound with the physio gave me great relief, followed by doing the exercises she gave me every single day. I still do some of those exercises years later. The exercises prevent my posture issues from getting even worse and help a lot with the pain.


During my hip replacement my surgeon made sure to correct my leg length difference as much as possible, this has almost removed my limp entirely (apart from when my hip muscles are very sore).


Another thing that can be done is to have an orthopaedic lift fitted to your shoes or an insole used for less server discrepancies. An orthopaedic specialist can advise on this.


It is important to make sure any walking aids such as sticks and crutches are the correct height as this can also be a contributing factor for posture issues. I feel that years of using a cane did not help my back, leaning to one side.


Fitness and fatigue


Due to pain when using my hip much before my replacement I had a poor level of fitness. When you struggle to even walk well it can make exercise tricky. Swimming was about the only proper exercise I found that was not too painful. It made recovery from my replacement surgery slower as not only were my leg muscles weak, but I had become used to not walking very far at all. I had to build up my fitness levels again. Physiotherapy, aqua fit classes and walking more helped with this.


Another reason I was so unfit was the fact that I was tired most of the time. Constant pain is exhausting. Pain can affect your sleep, making it hard to get comfortable and fall asleep. I found when very tired my hip hurt more, making it even harder to get to sleep. I was also on some strong pain medication which probably contributed to how tired I was feeling. Fatigue made getting much exercise and doing much at all hard work.


Surgery outcomes


According to my research it does not seem to make much difference if Perthes patients have surgery as a child or not long term. Recent studies are now showing that surgery seems to be a short term solution and that in fact some surgeries such as osteotomies can make later surgeries trickier. In a lot of cases it is hard to know if the hip would have grown back and recovered anyway given time as it sometimes does in those without any surgery.
http://www.harboursidephysiotherapy.co.uk/Injuries-Conditions/Hip/Research-Articles/Hip-Replacement-for-Adults-who-had-Perthes/a~4365/article.html

My Perthes Hip Story

This is what I can remember of my Perthes hip journey.  I may have missed some things out and got some of the exact dates and ages wrong, but it gives a good idea of what I have been through with my hip.

  • I was diagnosed with Legg Calve Perthes disease in my left hip aged seven in 1993. I was referred to an orthopedic specialist who used x-rays to diagnose me.  I was told to reduce heavy impact activity on the hip.  I was never very much into sports anyway, so did not mind having to give up things like PE in school.  However I was disappointed to have to leave my ballet classes that I really enjoyed.  I remember my mum pushing me to school in a large buggy to save me walking.
  • When I was seven or eight I spent a week in hospital. My left leg was put in traction for the week, meaning it had weights put on the end to pull the hip joint out more in preparation for surgery.  They were going to put me in a broomstick plaster, but when they opened me up for surgery they decided my hip was past the point they could do anything and nothing was done.  I think it was both disappointing and a relief to not have the treatment, as those plasters look very difficult to deal with.  It might have been good to try the treatment, but having heard stories of people who were in them for ages still going on to have hip issues later it sounds like it may not have been much use anyway.  After my hospital stay I used crutches for a number of months, possibly a year or more, and then moved onto a walking stick.
  • I had for a few sessions of physiotherapy. I did the exercises they give me at home some days, but probably quit doing them far too soon and did them too sporadically.  It is not easy to get an eight or nine year old to do daily exercises.  Some days the exercises hurt too much anyway.  My mum took me swimming more often on the advice of the physiotherapist. Swimming is one form of exercise I actually enjoyed as a child.  Swimming is less painful on the hip as the water takes the weight off it.
  • Aged about ten or eleven my hip was less painful for a couple of years or so. I stopped using any walking aid and managed to get about better.
  • My hip got more painful again and I started to use a walking stick aged thirteen. My doctor prescribed me with pain killing tablets that were at a dose not available over the counter.  I go back for more physiotherapy and a few sessions of hydrotherapy.  After the sessions end I do the hydrotherapy exercises at the regular swimming pool for a while, but again probably not often enough.
  • Aged fourteen I got a wheelchair for use on my worst days pain wise. It was not for everyday use and I used it when I had to walk long distances or was in a lot of pain.
  • In my mid to late teens I started to get mild shoulder, neck and back pain. My posture started to suffer due to years of walking badly.  My limp and slightly sideways gait have made my back very slightly curved and my shoulders somewhat rounded.
  • In my early twenties I find out the pain is now due to osteoarthritis brought on at a much earlier age than normal due to the damaged state Perthes left my hip in, which I gather is fairly common in people who had Perthes. I attend a pain clinic at the hospital to try and learn to manage my pain better, but they do not tell me much I did not already know.
  • I saw an orthopaedic surgeon and ask about having a hip replacement, but was told I was too young. I continued to use a walking stick till I was about twenty-one.  I gave up the stick when it no longer helped with the pain.
  • Whilst I was at university aged twenty-four I got a frozen shoulder. It was very painful and made moving my arm and shoulder very difficult.  Physiotherapy helped a lot with ultrasound massage and daily exercises to do at home to help keep the shoulder loose.  I did the exercises every day for several months which seemed to help.  I was told the frozen shoulder was due to my posture issues from my hip.
  • I ended up on crutches aged twenty-four when my hip pain got so bad I could hardly walk sometimes without them.
  • I decided it was time I saw an orthopedic surgeon again whilst I was at university and this meant I could see a different surgeon since I was in another part of the country who might look at my case differently. I ended up being referred to two different surgeons (not sure why).  One surgeon was based at the main county hospital and the other at a specialist orthopaedic hospital.   Both agreed my hip was beyond resurfacing anymore and both agreed they would give me a total hip replacement if I wanted.  However the county hospital surgeon seemed less keen for me to have my hip replaced and tried to talk me out of it,  so I went with the specialist hospital since they seemed to think I really did need it doing and understood why I wanted it so much.  I initially met with the surgeon’s assistant who seemed to actually know something about Perthes and said he would recommend me to his boss straight away as a case for a new hip.
  • I had my total hip replacement on August 3rd 2011 aged twenty-five, a month after completing university. I spent three nights in hospital, one before the surgery and two after. The day after surgery I went to physiotherapy.  I had exercises given to me to do twice daily at home to build up the strength again in my legs.  I was given some equipment such as a very handy grab stick as I was not allowed to bend more than a ninety degree angle for six weeks, a toilet seat raise and a toilet frame to help lower myself on and off the toilet.  They were going to loan me crutches, but I already had my own pair from before.  On day one I used a walking frame to go to the toilet, but from day two I was on crutches.  I used crutches for about three or four months after surgery, and then used one crutch for a while.
  • About six to nine months later I went back to physiotherapy due to muscle soreness around the hip. I was given a new set of exercises to advance me on further with my progress.  I attended a weekly physiotherapy gym for twelve weeks at the hospital.
  • The GP referred me to podiatry as she saw I had flat feet. The podiatrist also said my feet turn out too much when I walk due to years of walking badly with my hip.  This may have contributed to my back and posture issues.  I now have insoles for my shoes with arch support and a heal slope to turn my feet slightly more forwards.  The insoles do make walking slightly more comfortable for me.
  • Just after a year after my surgery I managed a twelve mile sponsored charity walk. Aqua fit classes at my local pool helped me to get fitter and stronger.
  • I started to get mild posture pain again aged twenty-eight. I went back to physiotherapy and got exercises that I now still do daily to keep my back, neck and shoulders from becoming too weak.
  • I also go back to physiotherapy for muscle weakness around the hip as it was causing me pain on and off. I now also do a few leg exercises daily to keep my legs from getting too painful and stiff.

Remember that every Perthes story is different and what works for one person may not work for another.  Some people have more mild cases and totally recover, some go on to have mild pain as an adult, but at a more manageable level and some like me go on to need a total hip replacement.  I feel lucky to have my false hip and love how much more I can now do because of it.  I take pain medication much less frequently and even then at a much lower dose than before.  I am fitter now than I ever remember in my life.  I know one day I will need a hip revision, but I feel it has been more than worth it.

I’m Disabled, Shout It From the Roof Tops

Recently on Facebook an interesting discussion came up on one of the groups I am in.  This is a group for people who have had total hip replacements at a younger age than normal.  Someone posted the following question:

‘If you have a THR (total hip replacement) and are doing great, are you still considered a person with disabilities?’

One of the first responses was, ‘I have NEVER considered myself disabled’ and there were quite a few more like that.  A lot of people being very quick to dismiss ever having been disabled at all made me feel quite sad.  As a society do we see it as so shameful or insulting to be disabled that we deny it and try to hide it?

My first thought was they are fools to deny being disabled as they will have missed out things that could have made their lives a lot easier.  For one thing my disabled parking badge had been extremely useful during my worst periods of pain in my hip, so that I could still go out and enjoy places without having to walk too much.  I could not have even gotten that badge without my GP signing to say I was disabled.  Then there is the financial benefit of officially admitting to being disabled so you can get disability benefit of some kind, which helped me pay for things like taxis to places most people could have walked.  Plus all those discounts they were missing out on at the theatre, leisure centre, theme parks and so on, when either you get a cut price ticket or your career/ friend or in my case my mum could get in for free.

For me I could hardly remember a time when I was not disabled having been diagnosed aged seven with my hip problem.  I soon got used to the idea and it became normal for me to consider myself as disabled.  However if you become disabled later in life due to an accident or illness and did not grow up as disabled I think it must be a lot harder to accept.  It can mean having to adjust your sense of identity  and can bring on a lot of strong, mixed emotions.  Before being disabled you may have had an idea of what you think it is to be disabled, ‘Whatever image you had of disability will be the image you first apply to yourself” (Life on Wheels: For the Active Wheelchair User, by Gary Karp).  You may have seen disabled people as unable to be independent, unable to have families or careers, which may make you feel like you have now lost all that in your life.  This is of course untrue of being disabled, but it can take a while to find that out and in the meantime you may try to deny the disability to yourself and others so you can carry on without the fear of change.

Trying to act normal as if your disability does not exist is often known as passing or passing for normal.  There is nothing wrong with wanting to be as independent as possible and being a part of everyday society, however passing is not about that, but more about the problems denying being disabled can cause.   This person with Fibromyalgia writes a good example of passing,

‘I had cut off anything that required long walking, like trips to the zoo, or going window shopping for the day, etc. etc. Slowly but surely, they had just dropped out of my life. As I could no longer do them “normally” meaning on my own two feet, without paying a price of extreme pain. Not to mention, being miserable the entire time.

I would do things like take a long ride or plane trip and would fall on my face when I tried to walk, after being in a forced legs down position for hours. I did this to myself, repeatedly, rather than let the flight personnel bring a chair up to the plane for me. I avoided travelling on account of it.

I finally said to heck with normal ! Got myself a wheelchair, or had them bring me one and went back out and did things again. I finally had to make a choice of, use the chair, or just let such activities slide out of my life … forever. I chose not to permit that to happen,’ (“Passing for normal” cultural pressure and disability).

I can understand why people try to pass themselves off as not disabled.  Quite often society can make you feel like a victim or as a problem.  It can be hard to convince some people who having a disability does not mean you can’t be independent and that you are not going to be a burden.  As Gary Karp writes ‘the boundary between making the most of your abilities and trying to pass as not disabled is a fine line’. However there often comes a point where either you give up on life and ever doing very much or you give up caring what other people say and think about it and just get on with living your life the best way you can for you.

My favourite response to the discussion on Facebook was ‘If you can hardly walk I think that makes you disabled.  All this brave stuff is great, but sometimes you need help.’

I am not sure of the actual answer to the initial question posted on Facebook.  I feel like I am temporarily not disabled any more as my new hip lets me walk and stand longer and I am not in very bad pain frequently.  However I know false hips tend to last about fifteen to twenty years, then they wear out and start to cause pain again.  Then I may well feel disabled again.

I have more than come to terms with calling myself disabled, in fact I kind of like it now as it means I have something interesting to talk about when I meet new people.  Being disabled has led me to meet some of my closest friends who are also disabled and found we had something that bonded us.  Being disabled is just part of being me and I am not going to deny a part of myself.

 

 

 

 

 

 

Facts about Perthes Disease

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.

Stages of flattening of the femoral head

Stages of flattening of the femoral head

  •   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.

Scottish Rite Orthosis brace  The brace allows the child to walk and play while it holds the hip joint in the best position for containment.

Scottish Rite Orthosis brace
The brace allows the child to walk and play while it holds the hip joint in the best position for containment.

  • 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.

Varus femoral osteotomy uses a plate and screws to hold the hi in the correct position.  A wedge of bone is added to the acetabulum to restore hip stability.

Varus femoral osteotomy uses a plate and screws to hold the hip in the correct position. A wedge of bone is added to the acetabulum to restore hip stability.

 

  • 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.