Two mums from West Yorkshire joined forces with the Muscular Dystrophy Campaign and Leeds General Infirmary to help launch a new 'Awaaz' support network for South Asian families yesterday.
Nazma Chowdhury from Bradford and Anisa Kothia from Dewsbury, who both have children affected by Duchenne muscular dystrophy, helped lead a family summer party event in Bradford which brought people affected by muscle wasting conditions together from across West Yorkshire.
Both Nazma and Anisa told the group, of 40 people affected by muscle wasting conditions, how they struggled to cope after their sons were diagnosed with a neuromuscular condition needing emotional and practical support and wanting to make contact with other families in a similar situation. The pair also stressed how language and cultural barriers posed an additional obstacle to many parents finding the help that they need.
Adopting the name 'Awaaz' for the new group, a Hindi and Urdu word for 'voice', Nazma and Anisa hope it will become a supportive community for families and a means of sharing advice on anything from finding accessible accommodation to accessing local expert care and health services.
The launch event of Awaaz gave families from across West Yorkshire an opportunity to discuss ideas and concerns with an expert neuromuscular care advisor, other families and representatives from the Muscular Dystrophy Campaign.
From initial discussions with families at the event the group now plans to work towards supporting each other by:
linking families up through a peer to peer support group for people from common cultures and languages
translating information factsheets and materials into Urdu and Bengali
ensuring extended family members understand and can support relatives with a neuromuscular condition
Anisa Kothia from Dewsbury, whose six-year-old son has Duchenne muscular dystrophy, said:
Being able to speak to other parents, who can relate to you and understand exactly what you are going through, can be a huge source of support and comfort.
We have been working hard to identify ways to help South Asian adults and children affected by neuromuscular conditions in particular, to work for a better future together. This seemed like the perfect way to bring families together. We want to build a strong community where we can all support and reach out to each other.
Nazma Chowdhury from Bradford, whose eleven-year-old son also has Duchenne muscular dystrophy, said:
I cannot tell you enough how much this forum will mean to people. It can be incredibly isolating having a child who has a condition that people know little about. Navigating the health system and negotiating all the NHS services can be extremely daunting. We hope this new forum will be the missing link for many families in the area. This group, as well as being a community for families, will help to breakdown the barrier of language and culture that may prevent some people getting the best support available.
Sue Manning, Specialist Neuromuscular Care Advisor at Leeds General Infirmary, said:
This project promises to be a huge success. By working side-by-side with Nazma and Anisa we hope this forum provides a much needed conduit for families to connect and support one another.
Bobby Ancil, Neuromuscular Outreach Manager at the Muscular Dystrophy Campaign, said:
The Muscular Dystrophy Campaign is really excited to be involved in this fantastic project, which aims to bring together South Asian families across West Yorkshire affected by muscular dystrophy and related neuromuscular conditions. We know that peer-to-peer support can be invaluable, especially for newly diagnosed families who feel that they have nowhere to turn and are forced to cope alone with the bombshell of diagnosis. This group will help people realise that they are not alone.
The West Yorkshire Awaaz group will meet again on Sunday September 28th at the Bradford Mayfield Centre from 2.00pm- 4.30pm and we welcome families from across the region to come along and join us.
If you would like to find out more about the Awaaz project or to attend the meeting on Sunday 28th September, please contact the Muscular Dystrophy Campaign's Neuromuscular Outreach Manager, Bobby Ancil, on firstname.lastname@example.org or 07920 188970.