Nicole Artuso

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What is muscular dystrophy? ……………………………………4 -causes -symptoms -kids section Living with muscular dystrophy…………………………………..5

Tips on living with muscular dystrophy………………………….7

Interview……………………………………………………………...8

Muscular Dystrophy Canada………………………………………11

Accommodating muscular dystrophy……………………………12

Walk for MD………………………………………………………….13

Designer Babies……………………………………………………..14

Fun and Games………………………………………………………15

Bibliography……..…………………………………………………..16

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WHAT IS MUSCULAR DYSTROPHY?

Muscular dystrophy is a genetic disorder that weakens the body’s bones over time. It’s caused my missing or incorrect genetic information, which prevents the body from making proteins required to build and maintain healthy, growing muscles. As normal muscle tissue weakens and wastes away, it is replaced with fatty and connective tissue with no purpose. People who are diagnosed with MD gradually lose the ability to do things like walk, stand upright, and move their arms and hands. There are many variations of MD- some causing muscle problems in infancy, and others much later, in adulthood. Although there is no cure for MD yet, doctors are continuing to work improving muscle and joint function, and muscle deterioration. Researchers are also quickly learning more about what causes the genetic disorder that leads to MD, as well as possible treatments for the disease.

Muscular dystrophy is a disease in

where the muscles of the body get

weaker and weaker and slowly stop

working. Muscles and membranes need

many different kinds of proteins to stay

healthy. Your genes tell your body how

to make the proteins your muscles

need. But in people with MD, these

genes have wrong information or leave

out important information, so the body

can't make these proteins properly.

Without these proteins, the muscles

break down and weaken over time. As

this happens to muscles, people with

MD begin to have problems with the

way their bodies work.

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The most common difficulties muscular dystrophy brings are:

- problems with coordination - problems with mobility - muscle weakness - joint stiffness

Other symptoms vary depending on the type of MD. With the most popluar form of MD, Duchenne muscular dystrophy, symptoms appear earlier in life between the ages of 1 and 6. The condition progresses so quickly that many people need a wheelchair by the age of 12.

Some other common symptoms of muscular dystrophy include fatigue and problems with the bones in the back and chest. People with MD may also eventually have trouble breathing witch could lead to pneumonia and heart problems. In extreme cases, those with MD might grow up to be mentally challenged or have trouble speaking3. Even though most with MD are limited to a wheelchair, they are still capable of participating in everyday activities like basketball and hockey. There are many organizations that help facilitate sports for handicapped people. For more information, visit http://www.cwsa.ca/en/site/, the Canadian Wheelchair Sports

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Tips on living with MD: Everyday life.

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Choosing clothes for wheelchair users can be a very difficult thing to do. Some things to keep in mind:

- shirts should have large armholes

- elastic waistband pants are more comfortable and make getting dressed easier

- loose fitting clothing is more comfortable to wear

Since the muscles of the body weaken quickly, body supports are a great way to help minimize the troubles. There are foot/ankle supports, hand/arm supports, and shoulder/neck supports available.

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As fatigue is inevitable with MD, don’t forget to plan rest periods throughout the day. IT is also important to drink lots of water so that your mouth never gets dry and makes it more difficult to breathe. When it comes to proper nutrition, make sure eating and drinking is done in a slow manner. Soft and smaller foods would be the better option when choosing what to eat. It is also important to realize that exercise will not strengthen muscles that have been weakened by MD. The purpose of exercise for people with MD is maintaining flexibility.

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HOW TO

DEAL

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Julia Carter is a 36 year old man who was diagnosed with MD at the age of 5. We recently had the opportunity to sit down with him and have a few questions answered. What was your parents reaction when they first found out? I don’t exactly know, but they have told me they were very shocked and was not expecting to ever hear that news before. What is one thing you wish to do but cannot? Growing up, I really wanted to be a hockey player. By the age of eight, I couldn't walk well and had to use support crutches, until I was permanently put in a wheelchair. What keeps you fighting and going? Simple. The fact that I know one day, there is going to be a cure for this. Maybe not tomorrow or next week, but one day. What is one suggestion you would make to parents who have kids with MD? Like all children, they must feel loved and accepted. They need to develop strong self-esteem.

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How would parents go about ensuring they have strong self-esteem? Parents must make sure they see the child first, not the disease. Surrounding the child with optimistic, patient people will help. It is also important to encourage the child to stay independent for as long as possible. How was it growing up with MD? It really isn’t as bad as people would think. Of course there were times when people made fun of me, or made comments, but I accepted that not everyone was used to the situation and I just had to make the best of it. Did having MD change your family dynamic? I wouldn’t say so. My family and friends didn’t treat me differently than any other person, so it made me feel comfortable in my own skin. What’s your biggest piece of advice for someone with MD? Don’t be afraid to ask for and accept help. People are going through the same things as you, and many of them have a lot of experience dealing with situations you might be in.

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Muscular Dystrophy Canada

Muscular Dystrophy

Canada

Muscular Dystrophy Canada is a not-for-profit organization committed to finding a cure for neuromuscular disorders through well funded research. Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure. We work with like-minded organizations to raise awareness on important health issues, and provide volunteers with the tools they need to participate in local advocacy efforts. Muscular Dystrophy Canada has put more than $64 million towards research since 1954.

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Accommodating muscular dystrophy

Ramps are an excellent way to assist someone with MD. No one actually realizes how crucial ramps are until you are put in that situation. Ramps are essential for people with MD so that they have access to places. You can use ramps for access to cars, homes, and public places. There must be better accommodation for people in wheelchairs so that they feel accepted wherever they go.

Chair lifts are another great way to assist someone with MD as it makes it easier for them to move from place to place within their home. This is essential in homes where a person with MD is living on their own or has a more independent lifestyle.

Groups can also be created for people with muscular dystrophy so that everyone can feel supported and accepted, around people who are facing the same issues as each other. This will give them an opportunity to express their feelings and address any concerns they might have.

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Muscular Dystrophy Canada Walk for Muscular Dystrophy

This year, we will be celebrating the 5th annual Walk for Muscular Dystrophy as our national signature fundraising event in support of Canadians affected by neuromuscular disorders. Bring your family, friends and colleagues and enjoy a fun, relaxed community event that raises spirits as well as funds! The Walk for Muscular Dystrophy is a fully accessible event that the entire family can participate in. The celebration includes activities for kids, snacks, refreshments and prizes. Participants can choose from a 1km or 5km route. Create a Team and together spend the day making muscles move to help support those affected by neuromuscular disorders! Last year the Walk for Muscular Dystrophy raised over $1,080,000 in 55 locations across Canada. With your help, and the support of thousands of participants, donors and volunteers we will make muscles move! Events like this are a great way to promote awareness about what is going on, and to lend a helping hand. Without the help of the public, there would be no hope in raising money to find a cure and eliminate the possibility of muscular dystrophy altogether!

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Designer Babies The Great Debate

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Advanced Reproductive Technologies are becoming more and more popular in today’s society. The main reasons couples use these technologies are to help infertile couples have children, to screen embryos for genetic disorders and select healthy ones. The big debate people are having right now is whether or not “designer babies” should be legalized. When screening genes, doctors would be able to tell if the baby is healthy or not. For example, some disorders like Duchenne Muscular Dystrophy are found only in males- so couples with a history of these disorders, can choose to have a female child and thus have a healthy baby. In this case, it would be a great idea to have this screening occur all the time, but the privilege would most likely be abused by couples just looking to “balance out their family” with either a boy or a girl. This is an issue that has been going on for a while now, and it is a great legal issue when it comes to dealing with genetics and preventing complications.

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BOYS COUNSELLING LEARNINGDIFFICULTY LIMITEDLIFESPAN MUSCLES PHYSIOTHERAPY SPLINTS SUPPORT WEAKNESS WHEELCHAIR X A Z Q C M L F C X Y J N O A O D B J X G A X T G H J D I M A V A M N E A M N E J D Z I T J K Y C N L Z A D H A A F Y L V Y V P A G H Z X K F O N E F F Y T F F X I V V B L T R Q K Z Y D X W W L V Y H B H G W O C O T P S J D V Y X U K Y H T K O B K Q O U D T K E J B W C B U X I R D E M C L Y M Q Z A G L Z I O B L R Y O H W X G T Q R D S J R I F Y U U W G P P B A O K G G D U A A I F S H N X J Z A P V C U W P W B C H N I V I Q S G S F R U H G R R D D V M W D D V C P E Z R O E S A K Y S O N I W G V D R L E L V Y R H S X P Y X I J T N V S F I M M L O C C T E D Q T Z D X I V E E N F P G I T N V O N

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Bibliography

http://www.muscle.ca/national/muscular-dystrophy/

http://kidshealth.org/kid/health_problems/bone/muscular_dystrophy.html

http://chealth.canoe.ca/condition_info_details.asp?disease_id=91

http://www.buzzle.com/articles/designer-babies.html

http://my.opera.com/Ashkir/blog/interview-with-tabitha-with-duchenne-muscular-dystrophy http://www.kinomobility.com/ http://musculardystrophybook.com/ http://www.disaboom.com/muscular-dystrophy/book-review-muscular-dystrophy-thefacts