West Midlands families given lifeline to cope with the impact of muscle-wasting conditions

West Midlands families joined forces to support the launch of Muscular Dystrophy UK’s West Midlands Family Support Group.

The group has been set up to help South Asian families affected by muscle-wasting conditions get access to vital support. It will provide a range of support to the West Midlands community, such as helping them to access local health and care services and find suitable, accessible accommodation.

Around 4,000 people from the South Asian community in England and Wales have a neuromuscular condition, such as muscular dystrophy, and up to 600 people on the West Midlands are affected. Neuromuscular conditions cause muscles to weaken and waste over time, leading to increasingly severe disability. There is no cure, and few treatment options, cutting lives short.

Spearheaded by Naima Ali-Khan (36) from Coventry, Sanah Rauf (21) from Wolverhampton and Jaspal Mann (41) from Coventry, the group hopes to break down some of the language and cultural barriers that may prevent South Asian families from accessing services.

Naima, a student nurse and Muscular Dystrophy UK ambassador, whose two teenage daughters have an ultra-rare condition called SEPN1-related myopathy, said:

“As a parent of children affected by a muscle-wasting condition, it was a privilege to meet other families who really understand what you are going through. It can be overwhelming at first when you don’t know where to go to for support and this is why the group is so important. It can be empowering and reassuring to speak to others in a similar situation and learn from their experience.

“I hope the group will act as a much-needed lifeline for families who need support and understanding, when dealing with the challenges neuromuscular disease can bring.”

Bobby Ancil, Senior Neuromuscular Outreach Manager at Muscular Dystrophy UK, said: “It was good to have families coming together and drawing strength from each other. Muscle-wasting conditions can turn lives upside down, and the feeling of isolation and helplessness people often feel after a diagnosis can be all-consuming.

“By reaching out to the South Asian community in the West Midlands, we want to help families get the right support when it is most needed.”

Muscular Dystrophy UK has been supporting South Asian families affected by muscular dystrophy through the Yorkshire Neuromuscular Awaaz Forum. In 2014, the charity teamed up with Leeds General Infirmary Neuromuscular Service and two mothers from West Yorkshire, whose sons have Duchenne muscular dystrophy, to form the group. Meeting regularly in Bradford, the group brings families affected by muscular dystrophy together to support each other.