Woman with Ehlers-Danlos Syndrome Raising Awareness about Hypermobility
Naomi is promoting EDS Awareness and is involved in a global Facebook group in the UK.
Naomi Laver, 21, pictured, suffers with Benign Joint Hypermobility Syndrome (BJHS) or Ehlers-Danlos syndrome (EDS) Type 3 that among other symptoms sees her limbs bend the wrong way.
The hereditary condition can be treated if it is detected early enough, but this was not the case for Mrs Laver.
She said: “It’s often dismissed as growing pains in young people or referred to as people being double-jointed, but you end up suffering later in life.
“Unfortunately there are no local physiotherapists who can help me as no-one knows how to deal with it properly.”
Mrs Laver, who has been diagnosed with fibromyalgia, is now part of a global Facebook group where sufferers and shares their experience.
The NHS don’t know how many people in the UK have joint hypermobility, but estimate that up to three in 10 people may be affected to some degree and that it affects women more than men.
The connective tissue disorder causes the sharp ends of bones to bend into abnormal positions, joints are likely to make significant clicking noises and there can be a whole host of outcomes including: arthritis as early as your teenage years, prolapsed discs and a poor response to pain medication.
Mrs Laver, who gets around in a wheelchair, said: “I’ve had a very painful life. At 18 my bones started seizing up and ever since my joints haven’t been as free moving.
“I’ll dislocate my elbow or my shoulder on a daily basis, I could be sleeping and wake up to see it’s happened while I’ve been in bed.
“I’m increasingly reliant on my wheelchair, I can walk short distances but I’ll end up in a lot of pain in my knees and ankles – so I feel as though I’m losing my dignity.”
Now Mrs Laver has to travel every four weeks to a specialist hospital in Bath where she undergoes one hour of physiotherapy that will ease the chronic pain for a day or two, but she has been told that it will never completely go away.”
There are many names for this disorder: Ehlers-Danlos Syndrome Type III, Hypermobility Syndrome (HMS), Benign Joint Hypermobility Syndrome (BJHS) — but the most important concern is finding doctors who can help.
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