I grew up in the 80's, a time when doctors didn't tell you anything and you didn't feel it your place to ask.
I think I first became aware around 6 years old, I just didn't feel well. I was a thin sickly child. There were certain foods that I could eat fine one minute and vomit when I ate it the next time. My joints hurt during PE at school but because I had grown up with it, I thought it was normal and everybody had pain like it. I was keen swimmer, the best in the school at one point and I was completing my lifesaving badges but my knees got so painful that I had to give it up. My doctor said it was growing pains.
By the age of 11, I had constant migraines and would sit banging my head against the wall. I went onto migraine medication but it didn't help. I was sent for a CT scan but was told "there's nothing wrong", a phrase that I would go on to hear many times. People said I should feel grateful that there was nothing wrong and I was but if there was no problem, why was I having constant migraines.
I started to get bad pain in my feet, ankles, hips and spine. I was referred to different specialists and sent for a myriad of tests. The results always came back the same "there's nothing wrong, it's all in your head" with one exception. The rheumatologist said my spine showed advanced degeneration only normally seen in someone of in their 70's or 80's but I was only 11. No reason was given for it and no diagnosis. Away I went again wondering why I had these problems but no one seemed to care. We didn't know it at the time but this was early-onset osteoarthritis of the spine, a common finding in hEDS.
I struggled on for another five years, not without pain or visits to the doctor. At 16 I had such bad gut problems that I was sent for a barium meal. Again I was told there was nothing wrong.
Over the years I was told:
- It was all in my head
- It was growing pains
- I was a hypochondriac
- "you're trouble is, you WANT to have something wrong with you"
I left school and went into nursing. I wanted to help people in a way that I wasn't helped. I wanted my life to be about something other than pain. Nursing was physically demanding and my health suffered for it but in 1999 I was offered a place at University Hospitals of Leicester to train as an ODP or Operating Department Practitioner, a health professional like a staff nurse but specialising in surgical nursing, anaesthetics and airway management.
My job as an ODP got harder and I started to develop heel pain and back pain which forced me into a wheelchair very quickly. I had to quit my nursing career at 30. My hopes and aspirations for the future all gone.
Nursing is not just a job, it's a calling. 'You do not become a Nurse, you are born a Nurse'
Finally, at 40 years of age, I was fed up with the feeling of my joints coming apart so I googled it and read about this rare condition called Ehlers-Danlos Syndrome. I read how people struggled for decades to get a diagnosis after being told it was all in their head. I read the list of symptoms and it was like reading my life story. I queried it with my new GP and he said I had been diagnosed with Type III EDS back in 1985 when I was 11 and it was assumed that I knew. The barium meal I had at 16 showed a hiatus hernia and it was assumed that I knew.
I finally found my diagnosis at 41, by which time the damage was done. Decades of running, exercise and the job had taken it's toll. I am left with life-changing disabilities like:
- Early-Onset Spondylosis with Osteophytes (Multi-Level)
- DDD (Degenerative Disc Disease
- Facet Joint Disease
- Spinal Stenosis with Cord Compression
- Poly-Osteoarthritis
- Hiatus Hernia
- Gastroparesis
- PoTS (Postural Orthostatic Tachycardia Syndrome)
- Dysautonomia
- MCAS (Mast Cell Activation Syndrome)
- IBS
I'm finally getting things put into place. I have an Occupational Therapist who arranged a Disabled Facilities Grant for adaptations to my home. I now have a wet-room, a through-floor lift, a powered wheelchair and an adapted car.
I'm still in constant pain and one of the cruelest things this condition can do is make you insensitive to opioids so they just don't work. I'm a full-time wheelchair user and have a 24-hour care plan in place but if I'd received my diagnosis as a child, my life would have been very different now.
An early diagnosis leads to the correct support, medication and treatment which can prevent the spine and joint damage. If you suspect your child has EDS symptoms, demand to see a rheumatologist or geneticist. EDS is more recognised now and specialists think it to be more common than originally thought.
