Due to JHS being widely unheard of, many people have to wait a long time before being diagnosed and treated. Some are even wrongly diagnosed.
If you have read the page about my story, you know that it was my physio that first noticed my JHS and I was diagnosed by a doctor 2 years later. However, the process was not quite that simple.
Within that 2 years I was seen by so many GP’s and consultants. Some were confused with my symptoms and told me that there was nothing they could do about them, some told me I was experiencing growing pains and some simply passed me on to another doctor because they didn’t understand my symptoms. I have been told on a number of occasions that I shouldn’t be experiencing my symptoms or that they were wrong for someone my age…Yet nothing was done.
I was aware that something wasn’t right. How could I go from a healthy, competitive gymnast to not being able to walk?
In the 2 years before my diagnosis, I was seen by GP’s, Orthopaedics, Musculoskeletal Specialists, Trauma Doctors, Physiotherapists and Rheumatologists. Finally I was referred to a Paediatric Musculoskeletal Orthopaedic doctor who diagnosed me with JHS and I received treatment for my dislocating hip.
You would think that once you’ve got a diagnosis, treatment would be simple. No. When my shoulder started dislocating and I was in increasing amounts of pain, I went through it all again. Being passed from doctor to doctor, including 2 different referrals to the sam shoulder specialist, whose only answer was that I might just have to deal with the dislocations. When I did get to see a doctor who had heard of JHS, they didn’t believe the diagnosis and I had to do the Beighton test again. Even now, a doctor see’s my notes or when I mention that I have JHS, I have to do the Beighton test to prove it.
One doctor told me that I did not have JHS but I had Fibromyalgia, but refused to put it on my notes. I was so confused. I didn’t really care what the diagnosis was, all I wanted was for the pain and dislocations to stop.
I discovered that the doctors didn’t want to admit that they didn’t know about JHS. Passing me on to another doctor or saying I have something different was much easier and less embarrassing.
Finally I was referred to another Musculoskeletal Specialist. He was totally confused by my symptoms and had never heard of JHS. But he admitted this. He sent me home and called me the next day. He said that he had been researching all night and that he can confirm that I have JHS and I was referred to a specialist to get my shoulder treated.
I, alongside other people with JHS, still come across doctors who don’t know about JHS. The lack of knowledge and understanding meant that I was not able to get treatment for 6 years after my first dislocation. Awareness needs to be raised for JHS to get people diagnosed and treated correctly and quicker.
Making the invisible, visible.