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Pioneering op helps Fiona see the back of daily dislocations

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Published Date: 24 December 2008
IT would happen as she was walking down the street. Or putting on her coat. Or getting out of bed.
By the age of 20, Fiona Kennedy was dislocating joints – elbows, knees, ankles, shoulders, toes, ribs and fingers – 1000 times a year. The chartered accountant from Roseburn was so used to it happening, she became well-practised in popping the joint
back into place herself, even in public.

But the sickening clunk only relieved the extreme agony. "I was in constant pain," she admits. "It's not like in films."

She was suffering from a severe form of Ehlers Danlos Syndrome – she believes there are less than 30 other such cases worldwide – a condition which causes the connective tissue in joints to loosen.

Now 27, Fiona is enjoying her first few weeks without pain – or dislocations – thanks to pioneering work by surgeon Gordon Mackay. Five weeks ago he carried out the last of ten operations, which began in March 2007, using techniques he perfected while working on injured sports stars.

Mr Mackay, one of the co-founders of the SPACE Clinic on Dalry Road along with former rugby star Gregor Townsend, explains: "We used keyhole surgery so that we could focus on the stretched tissue, which we were able to tighten."

The techniques were perfected on athletes such as rugby players. "For instance there are at least nine Scotland rugby players who have had the same procedure on their shoulder as Fiona," he says.

"We believe Fiona is the first person who has been treated for this in this way worldwide."

For Fiona it has, so far, proved a complete cure from a condition which first surfaced when she was 14. Stepping out of a car, she dislocated her kneecap. "I was in plaster for a couple of weeks but I just thought it was one of those things."

She put it down to a growing pains problems but over the next few years pain spread through her body, affected areas such as her shoulders and legs.

When she was 20, the condition took a turn for the worse and the mass dislocations began – she once had 18 shoulder dislocations in one day. But Fiona refused to let the pain get the better of her, although she took no painkillers.

"I never let it get in the way of my life. I just thought there's no point in sulking about it," she says.

She had "trailed around umpteen doctors" but failed to get diagnosis until two years ago when she visited a dermatologist at the ERI after an allergic reaction to an ice gel. "I told him that was the least of my worries and when I explained, he said: 'That sounds like Ehlers Danlos'."

Even then there was little most of the medical profession believed they could do, but Fiona was determined to get some kind of treatment. Eventually she was put in touch with Gordon through the Ross Hall Hospital in Glasgow, where the operations took place.

Now Fiona is just enjoying life without dislocations.

"It's the day-to-day things which make a difference. I used to get up every morning and relocate my shoulders before going to work. I haven't had any dislocations, any pain. It's amazing."

For more information on the condition, log on to www.ednf.org





Page 1 of 1

  • Last Updated: 24 December 2008 10:45 AM
  • Source: Edinburgh Evening News
  • Location: Edinburgh
 
1

LindseyM,

Invergordon 26/12/2008 20:17:00
Hypermobile type Ehlers-Danlos sometimes known as Hypermobility Syndrome is not that rare. The best site to find more information is www.hypermobility.org.
2

FxK,

Edinburgh 27/12/2008 11:33:11
Hypermobility Syndrome and Ehlers Danlos Syndrome are not the same condition. I'm the patient mentioned in the above article and I have the Arthrochalasis type not the hypermobile strain of EDS. This link shows the different types of EDS and the incidence rates http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706/DSECTION=symptoms.
3

Rosie EDS hypermobility type,

West Wales 27/12/2008 23:19:25
What a shame the article does not make it clear that Fiona has Arthrochalasis type EDS. As Lindsey has mentioned above, EDS hypermobility type, sometimes known as Hyepermobility Syndrome (HMS) although expert opinion on this differs, is not that rare. The link mentioned by Fiona quotes the occurrence of EDS hypermobility type as 'one in 10,000 to 15,000 people'.
The article is misleading as it makes it sound as if there are only 30 people worldwide with EDS, rather than with the particular type she has.
I am happy for Fiona that her surgeries have been successful, I hope they the effected joints retain the corrections, and the ligaments do not stretch further. For many with EDS, surgery is not a good option as healing, scarring and further joint deterioration are part of the condition.
4

sina, HMS,

29/12/2008 11:24:32
firstly my very best wishes to fiona!

but to clarify:
there are indeed 1000's of people in the UK who deal with frequently subluxing and dislocating joints.

although fiona might well be one of just 30 with one of the rare types of EDS- most of the people with the not so rare EDS types, "classical" and "hypermobility", and people with "hypermobility syndrome" (which might or might no be the same than EDShypermobility type, expert's opinions vary on this) also have this problem.

some suffer, like fiona from multiple subluxes and dislocations in multiple joints daily, some are luckier in that only one joint may fully dislocate, or it will only happen every few days/weeks, some only have subluxations...

but for all, this means frequently having problems doing the simplest of things- and it's not as easy as simply avoiding certain things- as for example one minute you might be alright picking up a bag of potatos, then you pick up the empty plastic bag and sublux/dislocate your fingers/thumb/wrist/shoulders...

and of course it means pain- and some EDS/HMS ers develop chronic pain syndromes on top= they are always in pain (think about how all your muscles, joints, nerves ache when you get the flu- and then imagine that simple pain killers dont touch the pain- and then imagine this never stops...)

add a fair chance of also getting chronic fatigue, digestive/gynaecological problems, autonomic dysfunction, depression/anxiety, wound healing and scarring problems, local anaesthesia not working and more... it's a "lovely package".

I also would love to know more about the pioneering procedure- what exactly is pioneering about it?
that it was all done by keyhole surgery? or did they employ a brand new method for tightening the tissue? did they employ any foreign donor or non body materials to help stabilize the tightened tissue? or did they use fiona's own from a donor site?

According to conventional wisdom conventional surgery to tighten tissues in pe
5

sina, HMS,

29/12/2008 11:28:06
oops- my comment was 'too long'- here's the rest...

According to conventional wisdom conventional surgery to tighten tissues in people with connective tissue disorders like EDS/HMS is pity enough nowhere near as effective as in 'normals'.
As the body keeps producing the 'wrong' kind of collagen many EDS/HMSers find that with time the tissues just stretch again- starting the whole subluxing and dislocations all over again.

Add in that with some types of EDS people have severe problems with wound healing and scarring, and that EDSsymptoms/problems also pity enough dont always stay 'type specific" but can sometimes cross over, there might even be cross overs into other connective tissue disorders ... conventional wisdom advises to treat surgery as a "very last option".

so I for one will keep fingers and toes crossed that this was indeed a 'truly pioneering AND successful in connective tissue disorders procedure' and that hopefully in years to come many more people will benefit from it.

and if it wasnt quite as revolutionary and successful... I'm keeping fingers and toes crossed for fiona that she is one of the lucky people where surgery did bring lasting freedom from dislocations and no further complications.


 

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