People with the muscle-wasting condition, muscular dystrophy, need better health and social care services, including more accessible accommodation, Muscular Dystrophy Ireland (MDI) has said.
The charity has just launched its inaugural LOVEMDI awareness and fundraising campaign, which will take place from February 8-15.
Muscular dystrophy is a potentially life-limiting muscle-wasting condition that affects an estimated 1,500 people in Ireland. It can affect people of all ages, developing at birth, during childhood, or later in life. It can affect mobility and physical strength and there is currently no cure.
Many people affected require walking aids or wheelchairs and need assistive support in their daily lives
Launching its new campaign, MDI appealed to the next Government to provide increased support to people with this condition.
"Without improved health and social care services, people with muscular dystrophy are being forced to depend on supports from MDI. Of course, we will continue to do everything that we can to support members' specific needs through our respite care, transport and assistive equipment loan services.
"However, current health and social care services for people with muscular dystrophy and their families are not adequately meeting the needs that exist, and the next government needs to commit to urgently sorting this out," commented Garry Toner, chairperson of MDI.
Meanwhile, according to MDI information officer, Clair Kelly, the current housing crisis is proving particularly challenging for people with muscular dystrophy.
She noted that some are living in private rented accommodation that is ‘completely unsuited to their needs'. For those who require social housing, there is limited availability of accessible housing and waiting lists are ‘unacceptably long'.
"Others find themselves in need of specialist aids and equipment, personal assistant support and consultant visits. However, the lack of funding for equipment and personal assistance, and the lengthy delays for consultant appointments, in some cases for over a year, mean our members' health, quality of life and independence is being severely impacted," she pointed out.
The LOVEMDI campaign aims to raise awareness of the many challenges faced by people with muscular dystrophy and the positive impact the charity can have.
As part of the campaign, volunteers will be raising funds by selling LOVEMDI chocolates for €2. People can also make a €2 donation by texting LOVEMDI to 50300.