Two mums who experienced “immense isolation” after their young sons were diagnosed with a devastating muscle-wasting condition have set up a support network in the hope of sparing other parents the same plight.
Anisa Kothia and Nazma Chowdhury both have children affected by Duchenne muscular dystrophy.
They have joined forces with the Muscular Dystrophy Campaign and Leeds General Infirmary to bring together families living with muscular dystrophy and other muscle-wasting conditions across Yorkshire.
Both women tell how they struggled to cope after their sons were diagnosed with the life-limiting 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 they need.
Anisa, who lives in Thornhill Lees, has a six-year-old son with Duchenne.
She said: “It is a very rare condition – around one in 3,500 boys are affected. To find people who are going through the same thing as you, who can relate to you and support you, is a struggle.”
Muscle-wasting conditions cause muscles to weaken and waste over time, causing increasingly severe disability. Around 6,000 people in Yorkshire and Humberside are affected.
Anisa added: “From the moment of diagnosis it is emotionally draining and a big pressure. In some ways each day is a blessing but there is still that pressure as you don’t know how tomorrow will change things.”
Nazma, who lives in Bradford, has an 11-year-old son with Duchenne.
“I cannot tell you enough how much this forum will mean to people,” she said.
“It can be incredibly isolating having a child who has a condition that people know little about.”
Anisa and Nazma have chosen to call the group Awaaz, which means voice inHindi and Urdu. They hope it will become a supportive community for families to share advice.
“There are still families out there who are being diagnosed – I don’t want them to go through what we’ve been through,” Anisa said. “We can’t let one family struggle.”
The group’s next meeting is at Bradford Mayfield Centre on September 28.