Lisa Grant, hi.
I’ve amended the original post, Perthes in adulthood, as discussed yesterday, and I apologise sincerely for any offence caused by my initial remarks, issued in ignorance of the site’s functionality, which, as you quite rightly point out on my original blog post, has been superbly redressed.
I have sent a request through for membership and am dying to get to speak to like-minded sufferers in the forums – that is, if there are any. I’ve been diagnosed for over a year (fourteen months) and only yesterday really appreciated the severity of Perthes once you get past childhood (not that it’s a picnic then) as I detailed the symptoms to the psychologist. The prognosis is not good, especially with the complications.
The shrink replied from her iPhone to say she was on a break and I’ll pick up with her in a fortnight upon her return, but I’d like to interact with other sufferers as much for the medical staff treating me as my own curiosity. Shrinks with iPhones? Whodathoughtit?
Anyway -thank you once again for pointing out my errs, especially as you’re doing such a sterling job, and have been doing for a quarter of a century.
It was – and remains – my intention to highlight the plight of Perthes in adulthood more, however, I’m really struggling to find adults who’ve been diagnosed with Perthes with whom to discuss their own symptoms, diagnosis, treatment and recovery. If just one child can be diagnosed instead of slipping through the net like I did through reaching out to other adult sufferers, then it will be worth it. It’s just finding the buggers!
As I’m on state benefit (or, rather, have appealed against the DWP decision that came to the conclusion that I’m fit for work?!?!?), I cannot donate monetarily to the cause, but I can offer my time through my writing. You cannot deny that it causes a reaction!
I have a question:
Are there any facts and figures sheets available for adults with Perthes?
There are several suggestions online for the amount of people diagnosed, and what the split is of male/female, one hip/two hips, Perthes in childhood, prognosis and forecast for recovery, etc., but they differ – in some cases greatly.
Unbelievably, even on Wikipedia/Perthes, there is a section on Perthes in childhood (as you would expect), there is even a section on Perthes in dogs(!?), but little that addresses Perthes in adulthood. Other than, if detected, hip replacements are common after the age of fifty.
So, according to Wikipedia – and many other sources – you zip from sort of maximum age of 15 and then don’t Pass Go or collect £200 until you reach the age 50, with those 35 years in between (half of the traditional three-score and ten) being brushed under the carpet almost as if the condition is untreatable. I simply refuse to accept that, although the comments made by my consultant and the subsequent stream of pain relief and steroid injections into the groin (thank the lord for general anaesthetic) post-op would seem to vindicate that theory. I’ve already wasted one year of my life through convalescence – I will go completely around the bend if I have to wait another nine until my fiftieth for a pair of new hips!
What is the Perthes.org.uk take on Perthes in adults?
I have tried to query the forum for that exact search, but the returned information is mostly about how adults are looking after their children with Perthes condition, which is fully understandable as that is what the site has been created for.
Here’s an overview of how I have interpreted the figures I’ve come across in research:-
- Perthes affects 5.5 children in every 100,000 (as stated on your site, so I take that as read);
- the ratio of boy:girl is 4:1, four boys for every one girl
- the ratio of one hip:two hips is 5:1, for every single case of both hips being affected, there are five children diagnosed with just one hip affected
- 95% of all cases are diagnosed in childhood (for the life of me I can’t remember where I saw that figure, but it rings a bell)
I’d love for you to corroborate those figures as I’d hate to misinform the readership for a second time. I look forward to hearing from you.
All the very best, Zebedeerox.