[notice]Great need for research and education on rare Multiple System Atrophy (MSA) condition[/notice]
March has been designated MSA awareness month in order to draw attention to this rare, currently incurable neuro- degenerative illness that afflicts about one in 400 000 people.
MSA if often mistaken for Parkinson’s Disease and the current lack of awareness about the condition leads to misdiagnosis and mistreatment, as well as misdirected research funding that could be better applied to the MSA efforts.
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The disease is not considered to be hereditary and generally affects middle-aged men and women,
advancing rapidly, with progressive loss of motor skills, eventual confinement to bed, and death. It is very rare for someone to live 15 years with MSA. More information about MSA and current research initiatives can be found on the MSA awareness website , which also has links to MSA resources and Facebook groups.
For Deline Edwards of Port Elizabeth, MSA awareness month revives memories of her sister-in-law, Dianne Vermaak, who died of MSA two years ago. When Dianne first started to experience some loss of physical co-ordination her doctor diagnosed Parkinson’s Disease. At the time, Deline joined the Parkinson’s Disease Support Group in Port Elizabeth in order to better understand and support Dianne.
“I wondered why Dianne’s condition got worse so much faster than other Parkinson’s sufferers,” said Deline.
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Eventually Dianne went to see a neurologist in Cape Town and was told that she had MSA. This was about six years after her initial Parkinson’s diagnosis. In the last stages of her life she was unable to walk or talk but as is typical with the disease her mind remained sound while her body systems progressively shut down. Dianne spent her final years on a golf estate in Zambia where her husband Henry was a mine manager. After his mom’s death, her son Kevin, together with three supporters paddled the 2 200 km length of the Orange River to raise funds for the MSA Trust and to increase awareness of the disease.
Meanwhile Deline has continued to serve as an active member of the PE Parkinson’s Disease Support Group which brings together patients, their family members and friends, and care-givers. Two of the current patients are in fact MSA sufferers.
Deline said that as a Christian with a heart for people, the group provided her with a fulfilling opportunity to encourage Parkinson’s patients and those affected by the disease. The group meets at St John’s Anglican Church, Walmer, on the second Thursday of each month. Sometimes the meetings were addressed by medical experts, providing group members valuable opportunities to ask questions. The group also organised social and recreational activities. Anybody who was interested in finding out more about the group was welcome to call her at 083 6012 173, or Briar Wright at 079 391 5527.
This is a really a terrible disease, I watched Dianne slowly deteriorate for 6 years.