April 2014 Blog Posts (47)


Staff
A New Care Guide to Give to Your Provider – Imperatives for Duchenne Care

Unfortunately, the care of people living with Duchenne muscular dystrophy differs from country to country, from state to state, and even from center to center. Email and stories that we get daily confirm that, despite the availability of Care Standards there is still significant practice variability, including centers and locations where clinicians…

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Added by Kathi Kinnett on April 14, 2014 at 1:00pm — 10 Comments


Staff
My BRAVE Story: I desire to enjoy the condition of an ordinary life

Wings to fly...      This is not a story ,but it's a screed in my birthday today for you and my family. I wonder how often you have thought about this sentence. Since I realized I am not able to walk and my muscles are degenerating daily and that I suffer from Duchenne muscular dystrophy this feeling developed in me. It was then that I different from others; differences that isolated me unwillingly from my peers. They made me house-ridden so to keep thinking in the loneliness and…

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Added by PPMD on April 14, 2014 at 12:04pm — No Comments


Staff
My BRAVE Story: We've fought so incredibly hard and sacrificed everything

My 11 year old son Sam was diagnosed with Duchenne in 2005. Just the diagnosis made huge changes for our family and our future. Everything we did from that point on had to consider Sam's prognosis. In 2011, frustrated and fed up with delays of the first exon skipping trial starting here in the US, we took an opportunity to move to the UK for him to participate in…

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Added by PPMD on April 14, 2014 at 12:02pm — No Comments


Staff
My BRAVE Story: WE'LL find a way

Our son's diagnosis was incidental. A routine 3 year physical led to 3 months of testing. The specialists thought our son had cancer. I remember the exact moment I heard "his CT was clear, you can take him home" and I cried with relief. Just 5 hours later his blood work came back & indicated Duchenne MD. We had not even considered MD and neither had the 6 specialists or our pediatrician. When our neurologist said it was most likely Duchenne I thought "I wish they would have…

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Added by PPMD on April 14, 2014 at 11:59am — No Comments


Staff
My BRAVE Story: We have become reluctant experts

Years ago, when Daniel was almost five, we received the news that he had Duchenne muscular dystrophy. We knew nothing about Duchenne at the time, but now that Daniel has just passed his 20th birthday, we have become reluctant experts, and his sister has become an outspoken advocate for people with disabilities.

At five, Daniel walked funny--so said the other kids. At seven, he bloated up due to the steroids. At eight, he began using a wheelchair--too many near stampedes in…

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Added by PPMD on April 14, 2014 at 11:30am — No Comments

Run for our sons

We've never had a Run for our Sons in Yakima, Washington and I would love to get one going for next year.  Please send me information about how to go about it, what I need to do, etc.

 

I did the ShamPatrol this year and had a blast but want to be more involved next year.  Please send me information for the Run!

Added by Carol Riker on April 12, 2014 at 6:41am — No Comments


Staff
Ongoing Traumatic Stress

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living …

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Added by PPMD on April 4, 2014 at 11:36am — 4 Comments

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