I had a sleepless night last night. I couldn't get comfy because my hip and sacro-iliac joint were irritating me, and I was feeling plagued by a lot of information going around in my head: The run-around I have been given over the past year and a half; the fact that my first surgeon may not have fully corrected the dysplasia in my left hip, but also going round and round in my head was the stories of those with DDH being misdiagnosed and even going through the wrong surgeries as a consequence of this, before it finally being discovered that they have DDH. If I'm honest, I was feeling a little bit burdened by all the negative stories I have heard about the difficulties people have trying to get diagnosed and find the right treatment, and the consequences this then has on their treatment options and the rest of their life. And the years of pain and disability some have had to go through before receiving a diagnosis. It was all spinning around my head. It was really weird!
I was invited to share my story at a research seminar the other week about the long term effects of having what's called a "paediatric Hip Condition" such as Hip Dysplasia. It was being run by some individuals who are collecting data on how this condition presents in it's early stages - as it can go hidden for many years due to the body's ability to compensate for the abnormal hip anatomy. What is being found is quite alarming: it has taken over 20 years to get a diagnosis in some cases; DDH is sometimes confused with Femoro-Acetabular Impingement; it seems there is a lack of belief in some cases, due to symptoms being intermittent and hard to pin down. It is also interesting that DDH is not taught about in UK physiotherapy degrees. Alarming as a physio is sometimes the first point of call for patients, and dysplasia can present with very similar symptoms to hip impingement.
Here is a recent post to an online group I am part of (shared with permission):
"Just got the dysplasia diagnosis finally confirmed yesterday. I am 42. Initial diagnosis was FAI (cam impingement) along and arthroscopic surgery recommendations. But 2nd and 3rd opinions indicate a mild dysplasia for which THR is the only cure. I was warned that arthroscopic impingement surgery would worsen my specific condition so I am happy to have got the second opinions..."
I have been wondering if I should be a bit more intentional about the knowledge that I have about DDH and how it presents in patients. For example when I'm in MSK physio placements or rotations, or just generally as a soon-to-be qualified health professional. It's very difficult at this stage because although I have theoretical knowledge and personal experience of the condition, I am still at the beginning of my physiotherapy career and don't have the experience in a practical sense to speak with authority on this issue. But there does seem to be a gap in the awareness and understanding of this condition, and certain aspects of my understanding of it could only be beneficial. Am I being an upstart? Does it really matter?? In this 'dark night of the soul' I found myself in, it really mattered. Do I have a responsibility to raise the awareness of DDH, as a health professional and a patient with this condition? I can only learn from my experience and apply it when it practice.
