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Living with Muscular Dystrophy and Neuromuscular Diseases

“One of the main problems that came along with watching my condition deteriorate was ever-increasing fear of the unknown.”

Neuromuscular diseases are rare acquired or inherited (genetic) conditions that affect some part of the neuromuscular system such as:

  • The muscles
  • The peripheral motor nerves (in arms, legs, neck and face)
  • The neuromuscular junction where the nerves and muscles meet
  • The muscle-controlling nerve cells (motor neurons) in the spinal cord

More than a million people in the United States are affected by some form of neuromuscular disease, and about 40 percent of them are under age 18, according to The Muscular Dystrophy Association.

What is Muscular Dystrophy? 

Muscular dystrophies, or MD, are a group of inherited conditions, characterized by progressive weakness and degeneration of the muscles that control movement. Symptoms such as severity of muscle weakness, age of onset, progression and intellectual disability vary with the different types of muscular dystrophy. There are nine primarily types of Muscular Dystrophy and over 30 additional neuromuscular diseases.

Listed below are the nine different types of muscular dystrophy. Each type differs in the muscles affected, the age of onset, and its rate of progression. The most well known of the muscular dystrophies is Duchenne muscular dystrophy (DMD), followed by Becker muscular dystrophy (BMD).

MD

Duchenne MD is the leading genetic killer of boys worldwide. Duchenne and Becker muscular dystrophy, alone affect approximately 1 in every 3,500 to 5,000 boys, or between 400 and 600 live male births each year in the United States.

The faulty gene that causes the disease prevents the body from producing dystrophin. This is a protein crucial for maintaining muscle cell integrity and function. A person with DMD will eventually lose the ability to walk and will have problems with breathing and his or her heart.For most, their life expectancy is in their early-mid 20’s.

Duchenne Muscular Dystrophy Inspiration

Dalton Defeating Duchenne

On august 24 2010 at 6 years old, Dalton was diagnosed with Duchenne Muscular Dystrophy. As Dalton’s disease continues to progress, his parents are doing everything they can to provide him with the resources that he needs to continue living his life. Please take a moment to learn more about the Al-Chokhachi family and how they are using GiveForward to help their HERO: Dalton Defeating Duchenne.

Team Jamesy

When 4-year-old, James was diagnosed with DMD his aunt started turned to GiveForward.  Her mission, to raise funds to give Jamsey all the treatment that he will need.  See how Paula is using her fundraising page to help ease the journey of struggles and financial strain for James and his family: Team Jamesy

Nerve cells in the spinal cord: What is Motor Neuron Disease?

Motor Neuron Disease are classified according to whether they are inherited or sporadic, and to whether degeneration affects upper motor neurons, lower motor neurons, or both. In adults, the most common MND is amyotrophic lateral sclerosis (ALS), which affects both upper and lower motor neurons.

Amyotrophic lateral sclerosis – better known as ALS or Lou Gehrig’s disease is a progressive, ultimately fatal disorder that disrupts signals to voluntary muscles resulting in gradual weakening until they are paralyzed. The throat muscles and diaphragm also become paralyzed, forcing many patients to resort to a feeding tube and ventilator.

  • Most individuals with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms.
  • ALS most commonly strikes people between 40 and 60 years of age, but younger and older individuals also can develop the disease.
  • Men are affected more often than women.
  • Most cases of ALS occur sporadically, and family members of those individuals are not considered to be at increased risk for developing the disease, according to The National Institue of Neurological Disorders and Stroke.

ALS Inspiration

Paul and Mary Kay O’Neil

Paul and Mary Kay O’Neil have been married for almost 40 years. They have two children and two young grandchildren. Paul was diagnosed with ALS in September 2013. Still reeling from Paul’s diagnosis, Mary Kay, was diagnosed with metastatic melanoma that has spread to her lungs, liver, and brain. Friends and family of Paul & Mary Kay O’Neil have raised nearly $25,000 to help with their battles against ALS and metastatic melanoma. Visit their GiveForward fundraising page to find out more information: Paul and Mary Kay O’Neil

What are the other neuromuscular diseases? Find a complete list of diseases here.

Treatment Options

At the moment, there is no cure for muscular dystrophy, but there is hope.

There is no specific treatment to stop or reverse any form of MD, but medications and therapy can slow the course of the disease. The main course of treatment is physical treatment to keep the muscles working for as long as possible. For support, the doctor may order orthopedic appliances, and in some cases, corrective orthopedic surgery is preformed to allow more mobility. The patient may need speech and respiratory therapy and their medications may include corticosteroids to slow muscle degeneration, and in some patients an anti-seizure

MD Families + GiveForward:

When you are first diagnosed it can be difficult to take in what it means for you, your family, friends and colleagues. Everyone involved will need lots of support and access to the right information about how to manage the long-term impact of this diagnosis. GiveForward is a site that can help you raise awareness and manage the financial strain. GiveForward has helped raise $86,140,400 towards medical expenses; explore our fundraisers to meet others who are using or have used GiveForward: EXPLORE.

 

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