A woman has revealed how she finally received a health diagnosis after years of allegedly being fobbed off by doctors.
Kamilah Hale, from Bromley, was in what she considered to be normal health when, one day, everything changed.
She began feeling pain in her joints that eventually became so severe she couldn’t stand being hugged and was forced to use walking aids to get around.
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This nightmare went on for over a decade, with doctors unable to give her any answers.
Now, after seven years, the mystery has finally been solved.
Now aged 35, Kamilah is sharing her story to urge anyone who feels or is told their pain is “just in their head” to push harder for help.
“Doctors spent years fobbing me off,” she told Need To Know.
“I actually still get a bit emotional when I think about it because I remember how depressed and hopeless I was feeling [before my diagnosis].
“I couldn’t work and I’d lost friends because I couldn’t go out anymore.
“I was a shadow of my former self.
“If I moved the wrong way, I’d get an awful stabbing pain in my hip, to the point I had to stifle screams at my desk at work.
“Even hugs were painful.
“I reached a point where I would cry every night from the pain.
“At that point, I genuinely would’ve let someone cut off my leg if I knew it would help.
“After being pushed to do more by my mum, one GP referred me to a rheumatologist.
“My mum had to push me in a wheelchair to the appointment as I could barely walk by that point.
“I explained my symptoms and the rheumatologist immediately questioned why I was using a wheelchair – as if it wasn’t obvious.
“He asked my mum strange questions, like whether my parents were together and if she had any hobbies or a boyfriend.
“It was clear he was implying she had nothing better to do than make up imaginary illnesses for me.
“Another doctor suggested the pain was linked to stress.
“But my only stress was sudden onset of debilitating hip pain.
“She too raised an eyebrow at my wheelchair.
“I can’t describe the relief I felt when I finally got the help that I deserved from the start.”
The rheumatologist diagnosed Kamilah with bursitis, which is an inflammation of a bursa – a closed, fluid-filled sac that works as a cushion and gliding surface to reduce friction between tissues of the body.
This can only be treated with rest, ice and home remedies, which she was sent home to do.
Another, more senior rheumatologist, reviewed Kamilah’s symptoms and suggested that she could have an underlying issue that would need a particular type of scan to diagnose.
But she claims no scan was ever booked in.
Instead, she was referred back to her GP to receive cognitive behavioural therapy.
She said: “I started to wonder if the pain really was in my head at this point, so I attended an introductory CBT session but, with the therapist’s agreement, I decided not to continue as it didn’t seem appropriate for me.”
After four years of running from hospital to hospital and GP to GP, Kamilah finally had a breakthrough.
She said: “My mum found an orthopaedic surgeon at UCL Hospital called Mr Witt, who specialises in working with young people with hip problems.
“He eventually diagnosed me with several different hip issues that were causing my pain, the most significant were hip dysplasia, joint hypermobility syndrome and acetabular retroversion.”
In the past 10 years, Kamilah has five surgeries to help with her symptoms, including a hip reconstruction.
She said: “Just knowing I had options was a relief I can’t describe.
“The hip reconstruction surgeries were horrendous but the outcome was worth it.
“Although I’m not in the agony I was before and I use a wheelchair a lot less, I still struggle with my mobility on a daily basis.
“But I’ve grieved my old life and try to live my new life as fully as I can.
“The structural issues with my hip are fairly fixable, however, the hyper mobility isn’t.
“These days, I have absolutely no idea what the future holds for me pain-wise.
“I’m now grateful to be able to do little things like walking to the loo when I need to or being able to get myself a glass of water.
“As for the future, I just have to plan for the worst and hope for the best.”
TIMELINE:
Toddler – Joint pain.
18 to 20 – Kamilah had hip pain occasionally but I was living a very full life at university, she was “always going out with friends to dance.”
Age 20 – She began to experience hip pain intermittently but didn’t see a doctor.
Age 21 to 25 – Kamilah’s hip pain became permanent and she started consulting various doctors but wasn’t getting anywhere.
Ages 25 to 27 – She was referred to the orthopaedic surgeon, Mr. Witt, who performed a few minor surgical procedures to diagnose her properly as the case was complicated.
In the end, he found she had five different issues with her hips, the main ones being joint hypermobility, hip dysplasia and acetabular retroversion.
Age 27 – Kamilah had her first big surgery, she was in a wheelchair “100% of the time by this point.”
Age 27 to now (age 35) – She is averaging a surgery every two years and awaiting a hip replacement.
