Perthes in adulthood

Sorry to break the flow of Billy came, but this is perhaps a little more important than a horror story, although you may well just about say it is.

I’ve just sent off my letter to the psychologist as the Pain Management Consultant said that I ought to give her a bit of background before making the first appointment.  It’s not really until you write shit down and have to think about it that it genuinely sinks in just how serious a given problem is.  Said occurrence has just this afternoon happened to me, following me writing this letter to forewarn the shrink:

Karen, good afternoon.

I received your letter, thank you, regarding the referral from Dr XXX at Swanpool. 

A bit of background for you before we proceed.

It was at the behest of neurologist Dr YYY at The City Hospital, Birmingham that I receive counsel. 

It appears that I have had Perthes since childhood but it has only recently been diagnosed (May 2011), at the tender age of 40 as I was then.  Although the surgeons are working to correct it (left side operated upon but not healing well at all, right side awaiting surgery, pending results on left), the nerve damage as a result of years of abrasion is permanent, compounded by the onset of arthritis in the hip and eroding cartilage at the femoral head/hip joint. 

Having lived with the condition, albeit unknowingly, for probably 30 years and getting to grips with the fact that my nerves will never heal, coupled with the fact that it’s now almost 12 months since I have worked and with very little possibility of doing so in the near future, both my GP (Dr ZZZ, Horseley Heath Medical Practise) and Pain Management Consultant Dr XXX concur with Dr YYY that psychology and counsel of some description is needed.

As the months pass by (as does life) with savings almost eroded and no sign of a return to work on the horizon, I have to admit that what was once a positive outlook for a decent recovery is now looking bleak.  With the prospect of never working full-time again and a life-time of opiates and other medication to control both bone and nerve pain, coupled with reliance on others and limited earning capacity, that once half-full glass is most definitely now looking half-empty, if not altogether drained.

I don’t think that I really appreciate, yet, just how severe and restrictive Perthes can be in adulthood – or, more likely, I don’t want to know.  Even in children, whose bones are growing, one hip/femur can take 18 months to 2 years to grow back.  Given that bones stop healing so well after the age of 35 – necrosis being harder to rejuvenate – and the fact that I’ve got the condition in both hips instead of one as is usual and an outcrop of bone growing the wrong way (removed from the left hip during surgery but still cutting into the nerve where it juts out from the right hip), cartilage erosion and arthritis in both hips, the prognosis is becoming ever more depressing.

Wow – putting it all down in writing really hammers home the severity of it.  What can be done to help?

So there we have it, Karen.  That’s me.

I look forward to hearing from you, soon.

My point of posting this is purely this.  There is a charity set up for this condition/disease: The Perthes Association. On their website, it allows you to view a forum header, but you must register to see the information.  As registration is not allowed at this time without paying a £15 annual subscription, it’s more or less saying: “pay up, or piss off!”. Amendment:- Do not try to access the site from the forum as a new user through the link where it states: ‘Welcome Guest, posting in this forum requires registration.’ – this takes you to a dead page that you cannot access until you have joined.

You can join the Perthes Association – for free, as it has been pointed out in the comment, below (thank you, Lisa), although the wording as it stands (30/07/2012) is somewhat ambiguous and, probably unintentionally, gives the impression to a new user that you have to pay to join – through the Perthes ¦ Membership page.

link to the → Perthes Membership page as a pdf that has been the source of all the consternation, so sorry.

Anyhoo, now that that’s sorted, back to it.

There is so little out there for adults who’ve been overlooked as children.  In many ways, we are suffering a great deal more because of this oversight in our childhood due to the inability of bone to recover beyond a certain age than young children who, although no doubt don’t find the experience a picnic, can get over the condition relatively quickly if it is diagnosed early enough and they get the right treatment and/or natural growth and rejuvenation of the dead cells at the head of the femur correct as a matter of course.

Does anyone else have an issue with Perthes in adulthood?  Especially if you’re in the 1 in 6 of those diagnosed that has both left and right affected – I’d love to hear from you.  Even more so if you’re getting nowhere with your consultant because you’re ‘too young for a hip replacement’ but past the age when your bones aren’t recovering properly after attempted surgery.

I’ve lost a year of my life already and do not want to waste any more; my career lies in tatters, house is threatened and every avenue seems to be a dead end.

If you’d rather not comment here, you can do so through a similar post on Google plus: Jerald Larson/Perthes in Adulthood.

Thanks for dropping by,

Zebedeerox. xxx


5 thoughts on “Perthes in adulthood

  1. I’m sorry but the information is misinformation. The fact that you have to register to use the forums on the Perthes Association website is true, however, it is absolutely UNTRUE that you have to pay to do so. Membership of the Association is not necessary to join the forum and is a choice people make who a) want to receive publications and regular newsletters, b) want to borrow equipment and finally c) want to support the work of the Association by attending events and joining the Contact a Family Style Database.


    1. Lisa, hi.
      Thanks for pointing that out; post amended. You may want to consider having the hyperlink against the word ‘registration’ in the forum header redirect to the Membership Form page rather than the log-in page. For someone not familiar with the site, it is like running into a dead end.
      Also, nowhere on the Membership page does it state that joining is free – all the text points to donating £15. I would wager that fact alone has put many people off joining the association, especially as they are unable to access some of the features without a membership – would you donate £15 online to something you couldn’t access? That’s certainly the impression I got, as I guess you gathered from my original post, which is now corrected.
      All the very best, Zebedeerox.


      1. Lisa, hi. That’s bang on!
        I’m looking further into this and, I know your website is predominantly for parents of children with Perthes, but of those 6,000 families on your database, are there many cases of Perthes in adulthood? I’m really struggling to find anything of use (for facts and figures) elsewhere online.
        Zeb. x


      2. Hiya,

        I’m sorry but to my knowledge there is no web site or support group specifically for adults, obviously because it is a childhood condition and because 90% of sufferers make a full recovery with no long term consequences. People like myself who were not picked up as children are welcome to join the Association, but many choose to join groups who support those with osteoarthritis which is often the long term outcome of Perthes due to the damage done to the femoral head and the socket during childhood.(Technically of course we don’t have Perthes, we have the after effects of Perthes disease.)

        To be honest, the information regarding exercise, medication, adult surgery, prosthesis etc., are the same, but a lot of those who have long term problems still remain members and receive support by phone or email. In addition the full members often volunteer to stay on and help with new families as well as providing feedback for other adults pre and post THR.

        I don’t know if you are aware but we also have a Facebook site, which again is free and I think currently there are over 1000 people registered on that site.

        Always happy to chat – Lisa


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