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Posts tagged “alkaline phosphatase enzyme

the KWH iPad Show #13 πŸ’œ my heartfelt plea for HPP

frowning Mac computer

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Hello & Welcome
to my 13thΒ episode of the
KWH iPad Show!

Today’s feature is aΒ petition in support of
more widespread awareness ofΒ the debilitating
disease that is Hypophosphatasia aka HPPΒ β™₯

NOTE: some of the images in this post were
found via facebook or google images.

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Link to HPP online petition.

Click image to visit the HPP online petition.

 

What is HPP and why should I care?
What does HPPΒ have to do with this knitting blog?
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HPP is an ultra-rare genetic bone/muscle disease. People with HPP are missing the enzyme required for growing healthy, strong bones. My husband has lived an active life, but was born with this debilitatingly degenerative disease. The pain it inflicts is continual andΒ increasingly extreme. It has forced him to give up a lotβ€”confining him to crutches throughout the past 3 years. Yet he refuses to give in by maintaining a spirited life that is gracious, kind, loving, intelligent, humble and all that is good in a human being πŸ™‚

HPP is like a strand of faulty DNA yarn that knits hubby & I together,Β while we live with and endure its limiting effects every day (I wrote briefly about HPP here). My hope, by the grace and strength of God Almighty, is to see him golf once again… or at least walk without crutches, someday!

The good news is that scientists are working toward treatment. And now for the first time ever, there exists an effective clinical trial treatmentβ€”Asfotase Alfaβ€”which is proving to be highly successful for children born with HPP!!! Hubby and his doctors have been knocking themselves out trying to access this treatment too. But alas, the government of Canada has only gotten so far as to send letters stating their eager intent to get the treatment to him… sigh … So we wait. Then when nothing happens, we alter our lifestyle accordingly and wait some more… And all the while, hubby’s precious bones continue to deteriorate 😦

But what can any of us do?

Please join us in hope and prayer for someone to finally cut through that blasted red tape and allow this treatment to begin the healing process for hubby’s bones! Treatment is seriously sitting right there, but we can’t access it… It’s a ludicrously atrocious frustration, to say the least!

Also, please join us in signing this online petition to help spread awareness for HPP and establish October 30th as the DAY OF COMBAT AGAINST HYPOPHOSPHATASIA… We and the global HPP community appreciate your effort! As well, please feel free to reblog this post and/or share this message via all your favourite social networking sites…
THANKS!!!

Screenshot of website page for HPP online petition.

Working together, we can hopefully help encourage governing bodies to stop dragging their feet on this pertinent and potentially life or death issue.

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Click the HPP images in this post to viewΒ the online petition from the AVAAZ website, which is written mostly in French. OnΒ the right-hand side, you’ll find “PREMIÈRE VISITE?”. Type your name (nom), email address, postal (zip) code and selectΒ country (pays) from the drop-down menu. Then press SIGNER to send the form.

NOTE: although the petition’s website is written mainly in French, itΒ does include several translations for the “Pourquoi c’est importantly” write-up. Scroll down the left-hand side to find your preferred language.

Visit the Rare Disease Report website to read more about HPP.
video source

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Thank you for visiting my Knitting With Heart blog today!
I’d love it if you’d also stop by and β€œlike” my Knitting With Heart facebook page.
Feel free to share links to my postsΒ πŸ™‚ I look forward to hearing from you!

Thank You & Merci from the bottom of our hearts!Β β™₯ Jackie