Coming together as a community: celebrating our recent Information Days - Muscular Dystrophy UK (2024)

FAQs

How does muscular dystrophy affect day to day life? ›

Walking and climbing stairs may become difficult and some people may be unable to hop or stand on their heels. Onset of distal MD is typically between the ages of 40 and 60. Although distal MD is primarily an autosomal dominant disorder, autosomal recessive forms have been reported in young adults.

The charity for muscle wasting conditions

With endless medical appointments, physiotherapy, treatments and respiratory support. That's why, for over 60 years, we've been building our community.

September is Muscular Dystrophy Month and as part the effort to raise awareness of this condition, we will be discussing what muscular dystrophy is, how it affects our bodies, and how cord blood stem cells could help sufferers.

The life expectancy for muscular dystrophy varies significantly depending on the type. For example, people with duch*enne muscular dystrophy (DMD) often die from the condition by the age of 25. But other forms of muscular dystrophy, such as oculopharyngeal muscular dystrophy, don't typically affect life expectancy.

We want to limit butter and other full- fat dairy products, fatty meats, fried foods, and packaged foods containing trans fat (partially hydrogenated or hydrogenated oils).

Although there's no cure for any form of muscular dystrophy, treatment for some forms of the disease can help extend the time a person with the disease can remain mobile and help with heart and lung muscle strength. Trials of new therapies are ongoing.

Muscular dystrophy is a progressive disease of muscle weakness, muscle atrophy and cardiac dysfunction. Patients afflicted with muscular dystrophy exhibit autonomic dysfunction along with cognitive impairment, severe depression, sadness, and anxiety.

In fact, preliminary results of our recent survey of people with MD show that 249 out of 321 people (78%) reported at least some daily pain. Of these individuals, 25% rated their average pain as being “severe,” or greater than five points on a scale of one (no pain) to ten (most severe pain).

Most cases of MD are caused by gene mutations (changes in the DNA sequence) that affect muscle proteins. The mutations are usually inherited, but in some cases they occur spontaneously. These spontaneous mutations can then be inherited by an affected person's offspring.

Myotonic Dystrophy: Myotonic dystrophy is the most common muscular dystrophy in adults but can also affect newborns and children. Newborns with myotonic dystrophy have low muscle tone and weakness at birth and typically need support for breathing and feeding.

Does muscular dystrophy affect the brain? ›

In addition, some patients with DMD have mild intellectual delay and heart problems (cardiomyopathy) due to lack of the dystrophin protein in the brain and in the heart muscle.

duch*enne muscular dystrophy (DMD) is a progressive, severe genetic disease. Most patients with DMD lose the ability to walk by their early teenage years and rarely survive beyond their 20s. Due to the physical symptoms of DMD, patients experience reduced quality of life (QoL) that hinders their abilities to work.

Dietary and lifestyle changes cannot directly impact muscular degradation. However, many people with muscular dystrophy have limited mobility, which makes proper nutrition essential. A high-fiber, high-protein, low-calorie diet with proper fluid intake is recommended for many patients with muscular dystrophy.

Cognitive deficits (language problems, mental retardation, ADHD, etc.) causing social difficulties. Psychosocial factors such as anxiety or depression. The physical limitations and fatigue caused by duch*enne making it difficult for the child to keep up with others during play activities, sports, or games.

However, young boys with DMD may have more difficulty with impulsivity and emotional control than other children their age. They are also more likely to be rigid and inflexible in their thinking, which can result in noncompliance or arguing. They may have difficulty making transitions.