Hardship for two women with HSP

Posted - September 2015 in HSPRF News

Both victims of rejection

 

Here are the stories of two women with HSP… one in Australia and the other in Uganda. Their lives and circumstances are worlds apart – the Australian woman’s application for a pension has been rejected despite being diagnosed with HSP, while the Ugandan woman has been rejected by her society because of her HSP.

 

HSP and the Disability Support Pension – NSW woman fighting to stave off homelessness

 

The following article appeared in the local newspaper in Port Macquarie on the New South Wales coast in June:

 

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It is a story of incredible suffering for someone living on society’s margins. Deborah Davidson has the degenerative condition hereditary spastic paraplegia. HSP, also known as familial spastic paraparesis, is a hereditary wasting disease. Ms Davidson’s older brother has the condition, but it’s so advanced he is now a quadriplegic.

The condition, for which there is no cure, is moving fast. Ms Davidson started experiencing back pain in January last year, and needed the help of a walker by March due to weakness in her muscles.

Doctors started considering HSP in October before turning their attentions to a spinal cyst in December. This year she was diagnosed with the condition. She is now confined to a wheelchair and cannot work. Yet the threat of homelessness is ever present because she cannot access the federal government’s disability support pension.

The disease does not show up in the blood, meaning doctors are unable to medically sign-off on the appropriate paperwork. This is despite, Ms Davidson says, all her physicians agreeing she has the condition.

Genetic testing is a possibility, however this starts at a cost of $4,000.

She previously lived in Wauchope and now, at just 48 years-of-age, is residing in a Kempsey nursing home. The day is fast approaching when she will be homeless.

The general manager of the Department of Human Services, Hank Jongen, said he understood Ms Davidson is having “a difficult time”.

“The department does not have discretion to grant payments outside the clear criteria set in legislation,” he said. “In order to assess a person’s eligibility for Disability Support Pension, claimants must provide medical evidence from their treating doctor or specialist that outlines their medical condition, diagnosis, treatment and prognosis.”

He said Ms Davidson has been contacted and “in addition to working with her to explore the support and assistance for which she is eligible, we have offered social worker support”.

Ms Davidson just wants “to try and get some justice with the DSP,” she said. “If that fell into place, everything else would start to fall into place too.”

“It’s just ridiculous I’m in a wheelchair with this condition and they say I’m not eligible. At the moment I can’t afford to live.”

 

SOURCE: Port Macquarie News, June 12, 2015, p5

Wasting away with no support

Ben Cooper


 

Village woman in Africa with HSP – A harrowing tale of her life

 

This story comes from NTV Uganda about a village woman’s life with HSP. In Uganda and many other countries, social and cultural attitudes towards people with disabilities results in their virtual exclusion from society. Combine with this the lack of medical and social support services and it makes for a very difficult life indeed.

 

From NTV Uganda:

There are people who are born with genes that will cause the lower part of the body to be paralysed with time – a condition known as Hereditary Spastic Paraplegia.

When a person’s nerve cells or neurons that control the muscles become diseased or injured, the person loses the ability to move the muscles voluntarily meaning the person is paralysed.

We met a woman with such condition in the villages of Gulu and bring you her story.

or here:

 

 

SOURCE: NTV-Uganda, August 1, 2015

 

A harrowing tale of a woman paralysed for 30 years

 

 

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