Posts

Stay Healthy This Respiratory Season: Flu, RSV and COVID-19 Tips for Muscular Dystrophy Families

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on guidance from Parent Project Muscular Dystrophy (published October 5, 2026), the US CDC and published care guidelines (see sources below). Published: October 17, 2026. As schools are in session and winter approaches, respiratory viruses such as influenza (flu), RSV and COVID-19 spread more easily. For most people, these infections are a few days of illness. For people with muscular dystrophy, whose breathing and coughing muscles may be weak, they can be much more dangerous, because weak muscles make it harder to clear mucus and fight infection. Parent Project Muscular Dystrophy has just published guidance for Duchenne and Becker families on how to prepare, and the same principles are widely useful for people with other muscular dystrophies whose breathing muscles are affected. This article puts that advice in simple words and adapts it for families in Pakistan. For more on these two conditions, read our guides ...

Congenital Muscular Dystrophy (CMD): Symptoms in Newborns and Infants

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on information from Cleveland Clinic, Muscular Dystrophy News, NINDS and published research (see sources below). Last updated: October 16, 2026. "My baby feels floppy, like a rag doll." "She hardly moves her arms and legs." "He cries weakly and takes a long time to feed." These are the words of many parents of babies with congenital muscular dystrophy (CMD) . Unlike most muscular dystrophies, which appear later in childhood or adulthood, CMD shows up at birth or in the first months of life. In many families, especially when the baby looks otherwise healthy, the signs are explained away as "weakness", "a lazy baby" or "he will grow out of it". This guide explains CMD in simple words: what it is, what causes it, its main types, how to recognise the signs in newborns and infants, how it is diagnosed, and what care is available. Quick facts CMD is a group...

Eteplirsen (Exondys 51) for Duchenne: Price, Availability and Access in Pakistan

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on regulatory, company and news sources listed below. Prices and availability were checked on October 16, 2026 and can change. Few medicines have been discussed as much in the Duchenne community as eteplirsen , sold as Exondys 51 . Families see it described as the first approved medicine for Duchenne, then see a price of hundreds of thousands of dollars a year, and then ask a painful question: "Can my child get it in Pakistan?" This article gives a clear, honest answer to the questions we hear most: what eteplirsen is, who can use it, what the evidence shows, how much it costs, where it is available, whether it can be brought to Pakistan, how the cost might be reduced, and what the government can do. Quick facts Eteplirsen is a weekly intravenous (IV) infusion for boys whose genetic report shows a change in the DMD gene that is amenable to exon 51 skipping , about 13% to 14% of people with Duchenne. ...

Myotonic Dystrophy (DM1 & DM2): Symptoms, Causes and Treatment

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on information from GeneReviews, NINDS and published genetic guidelines and reviews (see sources below). Last updated: October 13, 2026. "I cannot let go of a handshake." "My hands are stiff in cold weather." "I had cataracts at 35." "My father had a pacemaker, and my uncle was always sleepy." These may sound like unrelated problems, but in many families they are pieces of one puzzle: myotonic dystrophy . It is the most common muscular dystrophy that starts in adulthood, and it is unusual because it affects far more than muscles. It can involve the eyes, the heart, sleep, digestion, hormones and even thinking and mood. Because the signs are so varied, the condition is often missed for years. This guide explains myotonic dystrophy in simple words: what it is, the two types (DM1 and DM2), the causes, symptoms, diagnosis and treatment, and what families in Pakistan should know....

Facioscapulohumeral Muscular Dystrophy (FSHD): Face, Shoulder and Arm Weakness

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on information from the Muscular Dystrophy Association, published research and MDA Quest (see sources below). Last updated: October 11, 2026. "I cannot whistle or blow up a balloon." "My smile looks uneven." "I cannot lift my arms above my head." "My shoulder blade sticks out." These are the early signs that many people with facioscapulohumeral muscular dystrophy (FSHD) describe. FSHD is one of the most common forms of muscular dystrophy, yet it is often missed for years, because it begins with the face and shoulders and tends to affect one side more than the other. This guide explains FSHD in simple words: what it is, what causes it, how it is inherited, its symptoms, how it is diagnosed, and how it is managed, with a focus on families in Pakistan. Quick facts FSHD mainly weakens the muscles of the face , the shoulder blades and the upper arms , and later sometimes th...

Muscular Dystrophy UK Funds New Research at Cardiff University for a Rare Muscle Condition

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Written by the Muscular Dystrophy Pakistan (MDP) content team. Based on a news report from Herald.Wales (see sources below). Published: October 11, 2026. Rare muscle conditions often have no treatment at all, partly because they affect so few people that research money rarely flows towards them. That is why news of new funding matters, even when it comes from far away. In September 2026, the UK charity Muscular Dystrophy UK announced that it is investing £1.5 million in ten new research projects across England, Scotland and Wales. One of them, at Cardiff University, focuses on a rare condition called ADSS1 myopathy. This article explains the news in simple words and what it means for patients around the world, including in Pakistan. Quick facts Muscular Dystrophy UK announced £1.5 million for ten new research projects in England, Scotland and Wales. One project at Cardiff University is a four-year PhD led by Dr Fabrizio Pertusati, a lecturer in medicinal chemistry. It targets...