A rare syndrome brought together five Victorians in Rochester recently.ELAINE COONEY March 26, 2013 4:45am
Dempsey Wells, Paul Evans, Jackson (on Paul's knee), Max Pavlovsky, and Jasper Harrop met in Rochester recently to discuss their rare syndrome which affects their joints and muscles.
Five Victorians born with arthrogryposis met at Rochester recently to discuss how they dealt with the symptoms of the syndrome.
It was the first time they had the opportunity to meet others with the condition, which affects one in every 17,000 people, according to the Australian Arthrogryposis Group.
Arthrogryposis affects the joints and muscles by limiting the range of motion of hands, wrists, elbows, shoulders, hips, feet knees and other body parts.
The syndrome is caused by a baby’s lack of normal joint movement while in the womb, which can happen for many reasons, one being lack of room in the uterus.
Bendigo resident Paul Evans has lived with the condition for 44 years and this was the first time he met other people with the syndrome.
‘‘All the other patients are younger than me,’’ he said.
‘‘It’s strange; it’s like looking at myself as a kid.’’
He said the syndrome has not affected his quality of life and manages to live independently.
Mr Evans did not walk until he was four and went through 14 different operations before he was 10.
‘‘You get used to the pain (following surgery),’’ he said.
‘‘If a joint is tight the tendons are loosened.’’
He said he did not feel any pain now and the condition had not deteriorated but some things took more effort for him than they would for others.
Mr Evans, like many others with the syndrome, was born without biceps, inhibiting his ability to feed himself as he could not curl his arm to his mouth.
He underwent surgery to move his tricep to his bicep on his left arm, which allows him to move his arm towards his mouth, but the side-effect was he could no longer straighten that arm.
His wrist bones fused together and his achillies tendon was tight, which both needed surgery.
‘‘It affected every joint except my hips,’’ he said.
He attended regular school and went on to university.
Besides the usual peer pressure and some teasing, Mr Evans said growing up with the condition did not affect him socially.
‘‘I forced myself to try a bit harder,’’ he said.
He said he was a bright student at school and usually had operations during school holidays so his education was not too disrupted.
Mother of arthrogryposis patient Max Pavlovsky, Nicky Pleming, has been in constant search of other families touched by the condition and is learning more about the condition.
Through Facebook, she made contact with the families who united in Rochester recently and since then she has found five more people from Victoria and Queensland to add to the support group.
Doctors told Ms Pleming Max had spina bifida when she was 32 weeks pregnant but she was just eager to have her baby.
When at five days old he was diagnosed with arthrogryposis instead of spina bifida, she thought ‘‘well this is kinda nothing’’, saying it was easier to manage than spina bifida.
Max recently had his arms, hands, shoulders and elbows released through surgery and will soon have muscles from his legs placed where his missing biceps are so he can have more flexibility in his arms.
Ms Pleming said she grew frustrated watching Max doing what should be simple tasks because she wanted to help him, but he was content to take his time and do it himself.
‘‘He doesn’t get frustrated easily and doesn’t want help,’’ she said.
‘‘He’s made me a lot more positive about everything.
‘‘He has taught me to appreciate the little things in life.’’
Mother of arthrogryposis patient Jasper Harrop, Bec Sinclair said the group was a great opportunity to meet other people with the syndrome and enjoyed speaking to Mr Evans so they can see what happens to people with this condition past the age of 10.
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