Tuesday, August 10, 2010

About muscular dystrophy

 MUSCULAR DYSTROPHY AWARENESS OF KENYA [MUDAK]

Keeping hope alive

ABOUT US
Muscular Dystrophy Awareness of Kenya (MUDAK), is a voluntary non-profit making organization founded on the sole purpose of lobbying and creating awareness to the general public, and indeed the government, on the equal rights and freedom of people with neuromuscular conditions and physical disabilities to live their lives to the fullest.

MISSION STATEMENT
MUDAK aims to provide information, advice and support to people with neuromuscular disorders and other forms of physical disabilities to fully participate in society and to live a life of their own choosing.

OUR MISSION
 Muscular Dystrophy Awareness of Kenya`s [MUDAK] main objective is to create awareness about muscular dystrophy and other related neuromuscular disorders.

 To give information to families with member(s) affected by muscular dystrophy and other related neuromuscular disorders.

 To offer support and care to affected members who are in distress.

 To champion the coalition of doctors to find a cure for muscular dystrophy and other related neuromuscular disorders.

 To educate members and their families on the research and trials achieved so far.

OUR VISION
 To become Africa’s leading non-governmental organization that champions for the rights, freedom and awareness of people and families affected by neuromuscular disorders and other forms of physical disabilities.

CONTACTS
MUSCULAR DYSTROPHY AWARENESS OF KENYA [MUDAK]
P.O. BOX 50262-00200
NAIROBI, KENYA.

Musculardystophy.musculardyst@gmail.com

CONTACT
Email:musculardystrophy.musculardyst@gmail.com
Eva Olala
Tel:+254721944521
MUDAK
Nairobi,Kenya

15 comments:

  1. This is great information that could not have come at a better time.Keep up the good work Eva and MUDAK and may the Almighty God empower you always for this worthy cause.
    Thank you!

    Fanuel O. Oyuga

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  2. Stacy Wiparina, 35
    Dayton, Ohio
    type 2 spinal muscular atrophy

    Stacy Wiparina has never walked — never even crawled — but she’s achieved all the goals she set for herself as a child. “One was driving, another was college, another was having a career, another was having a husband, and the most important one of all was being a mother,” she says.
    Stacy Wiparina and her baby on the day of the child's baptism

    By the time she was in her early 20s, Wiparina had gone to college and learned to drive a van with joy stick computer control. She studied to be a school teacher, but had to abandon that career after contracting viral pneumonia from her students and spending three months in the hospital. “The doctor told me, ‘If you want to live, you better not teach,’” Wiparina said. She got a job in marketing instead.

    Wiparina married her college sweetheart, a tire store manager, and the couple began to investigate the idea of having children. “I’d always been told, ‘You should never try to have kids, there’s no way,’” Wiparina said. “We were scared to death because we didn’t know anything.”

    Wiparina contacted a high-risk obstetrician, David Colombo, at Ohio State University Medical Center in Columbus, who agreed to help her. He assembled a team, including an anesthesiologist and another high-risk obstetrician who had experience doing Caesarean deliveries under local anesthesia in Africa.

    Wiparina had no problems conceiving, and her two pregnancies went fine, other than the babies growing to the left side of her belly, rather than to the front (a result of her scoliosis, or spinal curvature).

    The births, unlike the pregnancies, required special consideration. Because of the spinal fusion Wiparina received at age 12 — “Otherwise I would have to lie down my whole life” — she could not get epidural anesthesia. Moreover, general anesthesia would be risky for a person with SMA.

    Wiparina never went into labor, although it isn’t clear that her SMA had anything to do with that. She lacked the strength to push the baby out, and in any case, her pelvis was too small for the baby to pass through. When the time came, the doctors performed a Caesarean (C-section) using several dozen shots of local anesthetic as the only pain relief.

    “I felt the first few shots,” Wiparina reports. “I didn’t look. Once they started to cut, I didn’t feel a whole lot, except for a really horrible sensation when they were putting my insides back in place.” The experience was frightening, Wiparina said, especially since she was wide awake the whole time.

    Wiparina went through an identical procedure for the birth of her second child, but “it wasn’t as bad, because I knew what was coming.” Besides, she adds, lots of women have to go through more than 45 minutes of discomfort in order to give birth.

    Since the birth of her second child, Wiparina has developed symptoms of a compressed cauda equina (a bundle of nerves at the base of the spine that looks like a horse’s tail). The cauda equina can become compressed in healthy women, but in Wiparina’s case, carrying two babies to term while sitting in a wheelchair almost certainly caused the condition.

    Wiparina has now lost most sensation below her waist, and it’s doubtful it will ever return. Surgery might be able to correct the condition, but it’s too risky.

    Wiparina doesn’t regret having children, though. She achieved her fondest dream and greatest goal, and if that’s the price she has to pay for it, she says, so be it.

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  3. hi, excuse me....
    do you like typography?

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  4. Eva, keep up the good work. I am so proud of you. I am glad you are in my life, because I never got a chance to know more about Muscular Dystrophy. Thanks for creating awareness.

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  5. hi Eva my name is Joel and i work with Fred[ chairperson HECI] as director of communication, just betting you might know him.

    I stumbled upon your blog while researching on Duchenne MD as i am preparing an awareness article on the subject and our future collaboration.

    This post has been very helpful and i will be linking it on our not-for-profit blog hopeducation.wordpress.com as reference hoping to collaborate and correspond with you in future for the perpetuation of this worthy endevour-thanks!!

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  6. I very much appreciate all of your comments dear friends;and remain looking forward for your continued co-operation in the improvement of this blogspot.Please feel welcome to follow more of my life's story on the website below.
    Thanks folks!
    http://www.thespeakfoundation.com/dnn/StoriesofStrength/EvaAchochOlala/tabid/85/Default.aspx

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  7. Philippe Croizon, First Quadruple Amputee to Swim Across the English Channel.
    Filed under Inspiring Disability Stories.

    Philippe’s swim across the English Channel is a true testament of how to overcome your disabilities through determination. He didn’t take on this challenge just to prove to himself he could do this amazing feat, but he did it for all those who have suffered tragedy and lost their taste for life.
    Philippe Croizon Quadriplegic Amputee in wetsuit1 190x300 Philippe Croizon, First Quadruple Amputee to Swim Across the English Channel.
    And Philippe, a French native, certainly knows what tragedy is all about. In 1994, he lost all of his limbs after suffering an electric shock as he stood on a ladder adjusting his television antenna, which touched a power line.
    Philippe expected the 21 mile crossover between Britain and France to take about 24 hours, but he completed the swim in just 13 1/2 hours. Maybe it was the company of three dolphins that swam alongside him for a good part of the journey that gave him the extra speed. Philippe trained for this swim for two years and was able to get himself into such a shape that he can swim at around 2 mph, which is only slightly slower than the 3 mph that able-bodied athletes might achieve. Not bad for a quadriplegic amputee!
    Shortly after his amazing accomplishment, he announced he plans to cross from Europe to Africa in the Strait of Gibraltar. Philippe, we certainly wish you good luck with this next challenge!

    Leave a Comment.

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  8. No Arms, No Legs, But One of the Happiest People in the World
    Filed under Articles and Stories, Inspiring Disability Stories

    What do you do when you have no arms and no legs? Your life may seem overwhelming because you may feel like you are missing out on so many things you are unable to do. Nothing is more untrue according to Nick Vujicic, who was born without arms and legs. It is all about attitude! If you concentrate on what you do have instead of what you don’t have, you are setting yourself up to become a happy person. Be thankful for what you have; don’t be bitter for what you don’t have!
    Nick Vujicic with soccer ball No Arms, No Legs, But One of the Happiest People in the WorldBeing a C5/C6 quadriplegic, I can relate to Nick’s inspirational message quite well. It’s easy to feel sorry for yourself when you’re disabled and to blame your disability when you run into adversities. I have been there many times! And, just like Nick, I feel that having a positive attitude is the foundation for being a happy person regardless of whether you are disabled or not. I truly believe keeping a bright outlook on life after my disabling accident is what has allowed me to live a good life.
    Nick certainly takes attitude and inspiration to the next level. Despite having no limbs, Nick is probably one of the most accomplished and happiest people in the world. One can only imagine the challenges he faced during his childhood years being ‘different’. But, he never gave up and instead turned his limitations into opportunities.
    Now at the age of 27, Nick travels all over the world inspiring and motivating millions of people from all walks of life. He believes there is a purpose in the struggles we encounter in our lives and that our attitude towards those struggles along with our faith can be the keys to overcoming the challenges we face. Watching his humorous and inspiring introductory video will encourage you to reflect on your own situation and will very likely remind you that life offers a lot to be grateful for, whether you’re disabled or not.

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  9. Jared Aronson’s Story – an Amazing Young Man with Duchenne Muscular Dystrophy.

    GILFORD – It’s one thing in life to find something that you love to do and it’s quite another to find that something only to have it taken away from you. Even more miraculous is when, what was taken away, is restored.
    Jared Aronson is an artist and has been since he was a child. Every since he can remember he has had a love for drawing and he has parlayed that love into a successful T-shirt company called Madhouse Tees (www.madhousetees.com).
    Now 23, his witty ideas translate well to the T-shirt medium and are popular with people of all ages. You see, Jared is confined to a wheelchair and only has the slightest use of his thumb making his artwork all the more remarkable.
    Jared’s parents first realized that something was wrong with their son when he was late to walk for his age. When he finally did get on his feet, he began falling around the age of four. A battery of tests confirmed that Jared had Duchenne Muscular Dystrophy, a progressive disease marked by the steady wasting of the muscles. Aronson’s health began to deteriorate steadily and he is now confined to a wheelchair and bound to a ventilator 24 hours a day, seven days a week and needs to be accompanied around the clock by his parents and nurses.
    There have been some close calls for Aronson, who has lived in Gilford his entire life. In fact, Jared received his diploma from Gilford High School while in Concord Hospital, where he spent 17 days in the intensive care unit after catching pneumonia.Throughout the progression of the disease, Jared has lost more and more of his ability to move. He has been seeing the therapists at Summit Rehabilitation in Gilford for a number of years and receives treatment three times a week to remain as flexible and limber as possible.
    When Aronson was first attached to a ventilator, he lost his power of speech. It took a while to track down a trach, or tube that attaches to his throat, identical to that which was used by Christopher Reeve, which allowed Jared to speak again.
    The way in which Aronson creates his artwork has also changed over the years due to his disease. “I used to use pens and pencils and then a computer mouse but after a while I was not able to even do that,” said Aronson.
    Jared gave up on drawing for a long period of time after he could no longer manipulate a mouse. He was essentially resigned to the fact that he would no longer be able to do one of the things he loves to do most in life. Then, he found that by using Photoshop it allowed him to draw using just his thumb and a sensitive track ball. He was once again able to pursue his passion, although in incredibly painstaking fashion. In fact Aronson says its takes him over 20 hours to create a single design.
    He begins by sketching the artwork, whether it’s from a preexisting design being parodied or an original design, and then filing in the colors pixel by pixel.
    Aronson first became interested in designing T-shirts when he was asked to do a design for the Aaron T. Francour Memorial Basketball Tournament. He has since continued to design the tournament’s shirts while also taking on many other projects such as designing shirts for a pig roast and creating designs for his friends.
    Jared continues to develop new designs and in fact he has just recently added four new T-shirts to his website and has countless other designs ready to go to print. He is also willing to take other’s ideas for a design and incorporate those designs into a shirt.
    Aronson’s entire line of T-shirts can be found at www.madhousetees.com and they would make an excellent gift this holiday season for those who appreciate an off-the-beaten-path sense of humor.

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  10. Darius Goes West Movie Review

    Even though he has a debilitating and fatal disease, Duchenne Muscular Dystrophy (DMD), Darius Weems shows us how to live in the documentary Darius Goes West. With the help of the 11 other members of "the crew,” 15-year-old Darius embarks on a cross-country quest to have his wheelchair customized on the hit MTV television show Pimp My Ride. Along the way, Darius and the crew make stops at many of the attractions in the U.S.A. Often funny, and always touching, his story educates and entertains at the same time.

    Darius Weems was born with the genetic disease Duchenne Muscular Dystrophy. At the time that this documentary was filmed, DMD had already taken the life of Darius's older brother. Darius uses a wheelchair, has limited use of his hands, and requires assistance for many of the daily activities of living.

    DMD is caused by a problem in the gene that produces a protein called dystrophin. This gene is carried on the X – chromosome, and DMD primarily affects males. Because of the lack of the protein dystrophin, voluntary muscles break down, causing progressive muscle weakness. By early adolescence, most boys with DMD use a wheelchair. Over time, DMD affects the muscles in the heart and respiratory system, and males with DMD die of heart and/or respiratory problems during late adolescence or early adulthood.

    Research into ways to stop or reverse muscle deterioration in DMD is ongoing. Currently, treatments include physical therapy, occupational therapy, surgical interventions, ventilatory assistance, and medication that helps to slow the progression of DMD. Further, those with DMD commonly used assistive devices including braces, standing frames, and wheelchairs.

    Over the course of their trip across the country, we witness the power of friendship in the lives of the 12 young men who make up the crew. Although Darius required assistance in many activities, his friends met his physical needs while treating Darius as an equal and a friend. In an era in which our young people are so often depicted by the media in a negative light, and males as unable to be nurturing, this documentary tells the true story of friendship and caring between these young men,

    Aside from the goal of having his wheelchair customized, Darius and the crew describes several other goals for this documentary - raise awareness of Duchenne Muscular Dystrophy, raise money towards research for a cure, and highlight the difficulties that a wheelchair user has an accessibility. Darius Goes West accomplishes each of these goals while entertaining and inspiring. This documentary has deserved the over 25 awards which it has won.

    According to the documentary website, the distribution of this DVD has raised more than one and a half million dollars for DMD research. Now 21 years of age, Darius Weems continues to work towards raising awareness and raising funds for DMD research, along with the other members of the crew. Along with educating and raising awareness, this movie will entertain, inspire, and demonstrate of what it really means to live life to the fullest.

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  11. WHAT ARE THE SYMPTOMS OF MUSCULAR DYSTROPHY?
    There are many different forms of muscular dystrophy, a genetic condition characterized by progressive muscle weakness and eventual muscle wasting. Recognizing the symptoms of muscular dystrophy can help people identify the condition in the early stages, which can allow them more opportunities for treatment and intervention. Especially in families with a history of the disease, it is important to look out for the early warning signs, and to consider genetic counseling to discuss the implications of the family history.

    In many patients with muscular dystrophy, early childhood development proceeds normally. However, as the child begins to toddle, signs of muscle weakness such as increased fatigue, difficulty sitting up, trouble walking, waddling, and trouble standing begin to appear. The patient may also experience symptoms of muscular dystrophy such as frequent falls, trouble negotiating grade or terrain changes, and gait abnormalities such as walking on the toes.

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  12. ACCESSIBLE VOTING--Neuromuscular Disorder

    Voting in elections remains a fundamental right, privilege, and responsibility for each U.S. citizen. In the past, polling places were not always easily accessible to those with mobility issues or other disabilities. Historically voting rates for those with disability have been low. Today, however, federal laws require that polling places be accessible. As member of the neuromuscular disease community, we must make sure our voices will be heard through casting our votes.

    The Voting Accessibility for the Elderly and Handicapped Act, passed in 1984, makes accessibility a requirement for all polling places for federal elections. If a polling place that is accessible to those with disability cannot be made available, there must be an alternative method for casting a ballot on the day of election. Further, this law requires that voter registration be made accessible to those with disability, and voting aides be made available during elections if needed.

    In 1993, the National Voter Registration Act (also called the “Motor Voter Act”) passed, making it easier for those with disability to register to vote. This act requires that any office for state-funded programs that primarily serve the disabled population must have registration forms and assistance with registration available. These offices must also send the completed voter registration forms in to be processed. In most states, people may also register to vote at the Secretary of State’s office when obtaining a driver’s license or legal identification.

    The American with Disabilities Act (ADA) also applies to voting. The ADA, in fact, published a guide to assist polling places with providing accessibility, including getting to, getting into, and using polling places. The United States Department of Justice (USDOJ) monitors compliance with these acts. Citizens can report violations of accessibility requirements that cannot be resolved with local polling authorities to the USDOJ.
    Historically many people, including women, people of color, and those with physical and intellectual disabilities were denied the right to vote. Chances are if you are reading this article, you may be a member of one or more of these groups. Polling authorities can no longer deny this fundamental right based on those previously used exclusion criteria. Make sure that you have registered to vote and cast your vote in the next election. Make sure that your voice is heard on the issues that matter to you.

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  13. Accessible Voting for the physically challenged.

    Voting in elections remains a fundamental right, privilege, and responsibility for each every adult. In some countries, polling places are not easily accessible to those with mobility issues or other disabilities. Historically voting rates for those with disability have been low. Today, however, federal laws in the U.S require that polling places be accessible. As member of the neuromuscular disease community, we must make sure our voices will be heard through casting our votes.

    The Voting Accessibility for the Elderly and Handicapped Act, passed in 1984, makes accessibility a requirement for all polling places for federal elections. If a polling place that is accessible to those with disability cannot be made available, there must be an alternative method for casting a ballot on the day of election. Further, this law requires that voter registration be made accessible to those with disability, and voting aides be made available during elections if needed.

    In 1993, the National Voter Registration Act (also called the “Motor Voter Act”) passed, making it easier for those with disability to register to vote. This act requires that any office for state-funded programs that primarily serve the disabled population must have registration forms and assistance with registration available. These offices must also send the completed voter registration forms in to be processed.

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  14. Hey, thanks to all who continue to view my profile, I hope that you will continue to journey with me as we create awareness in Kenya about muscular dystrophy.
    With muscular dystrophy you can never know simply because what you can do today might not be that simple tomorrow.
    it is my prayer that before everyone with a muscle disease finds it difficult to do what they love most a cure will be hear with us especially for the mozt fatal form known as Duchenne md.

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  15. Delta Fined for Violating Rules Protecting Air Travelers with Disabilities.

    This civil penalty is the largest penalty ever assessed against an airline by the Department of Transportation in a non-safety-related case.

    An investigation by the Department of Transportation’s Aviation Enforcement Office of disability complaints filed with Delta and DOT revealed many violations of the requirement to provide assistance getting on and off the airplane. The carrier’s complaint files also showed that it frequently did not provide an adequate written response to disability complaints from passengers. The Aviation Enforcement Office further found that Delta also failed to properly report each disability complaint in reports filed with the Department.

    An investigation by the Department of Transportation’s Aviation Enforcement Office of disability complaints filed with Delta and DOT revealed many violations of the requirement to provide assistance getting on and off the airplane. The carrier’s complaint files also showed that it frequently did not provide an adequate written response to disability complaints from passengers. The Aviation Enforcement Office further found that Delta also failed to properly report each disability complaint in reports filed with the Department.

    Of the of $2 million penalty, $750,000 must be paid by the carrier and up to $1,250,000 may be used to improve its service to passengers with disabilities beyond what is required by law. Delta may target up to $834,000 of the civil penalty amount toward the development and implementation of an automated wheelchair tracking system at the carrier's major hub airports. Up to $236,000 may be used toward developing and distributing customer service surveys for passengers with disabilities to rate Delta’s accommodation services and provide specific feedback to the carrier on how it can improve. In addition, up to $150,000 may be used to expand audits of the carrier’s compliance with Air Carrier Access Act rules and for consultation to help improve the quality of Delta’s services to passengers with disabilities at airports and up to $30,000 to enhance its website to improve air travel accessibility. The actual costs of these improvements by Delta will be significantly greater than the credited amounts.

    The consent order is available on the Internet at www.regulations.gov, docket DOT-OST-2011-0003

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