I have mentioned the MSK Online Project in other blog
entries, but I am happy to report that I am now a contributing member to the
team.
The founder of the project, La Velle Goodwin, recently made contact with Dr.
Giovanni Gambaro, who is a leading researcher of Nephrology and Urological
diseases in Italy.
She explained to him that many of the patients in our Facebook group: https://www.facebook.com/groups/Spongelife/, are highly
symptomatic, rather than being asymptomatic in regards to MSK, (like the
current research suggests), and that chronic pain and fatigue top the list of
complaints.
Dr. Gambaro has taken an active interest in our group, and is now in charge of
Phase IV of the MSK Online Project. He currently has an intern working on
questions for this Phase, which should be up and running in the near future. In
the meantime, Phase III is still underway, and can be accessed online at:
http://www.mskonlineproject.org/form.htm.
If you are an MSK...
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It is with mixed feelings that I'm writing this blog post.
On one hand, I'm very happy to report that we have added 12 more members to our
Facebook group in the last few weeks, but this is a bittersweet accomplishment.
Two of our newest members do not have MSK; their 5 year old daughters do.
We have welcomed them with open arms into the "
Facebook SpongeBob Kidney Group."
https://www.facebook.com/#!/groups/Spongelife/. How else do you explain
something so complex to a 5 year old? These mothers are committed to their children’s'
health, but they are scared to death for their future. Who wouldn't be in this
situation? I'm glad that they both found us early, so that they can get
accurate information about what it really means to have this disease and learn
strategies for helping their daughters cope, but it breaks my heart at the same
time. It's so difficult for adult patients to deal with MSK - the stones, the
infections and surgeries,...
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Halloween is fast approaching, and it won't be long before 2012 is over. Boy, has this year flown by! Things haven't changed a whole lot for MSK patients so far, and many in our Facebook group have had an extremely rough year so far. Several developed sepsis and required lengthy hospital stays due to infections that didn't show up on standard tests, but despite that, were there when surgical procedures were done. Others like me, have suffered with infections for many, many months and have been on countless rounds of antibiotics to no avail, while others continue to pass and mass produce countless stones in each kidney. Many of us have had to deal with the always dreaded stents (myself included). Personally, I will be having yet another surgery next week for a very large stone in my right kidney this time. You see, MSK patients don't get to take a day off from the pain - it's not something that a simple over the counter medication, or in many cases, even prescription medications...
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August 31, 2012
I’m glad to say that this petition has exceeded my
expectations, and I couldn’t be happier about it. When I initially set the goal
at 500 signatures, I thought it would probably take a while for that to happen.
Luckily, that wasn’t the case and it
wasn’t long before we met that number.
I decided to raise the goal to 700 signatures, because I
didn’t want people to read it and think that their signature wouldn’t matter -
EVERY signature matters, and now we are very close to reaching the 700 mark
with 647 as of this posting. I’d love to exceed this goal as well, so if you
just signed, or are reading this blog for the first time, please share the link
to the petition with everyone you know. Send the link through email, or post it
on your Facebook page and Twitter account – we need as many signatures as we
can possibly get.
When I wrote the petition, we had 270 members in our closed
MSK Facebook group. Thanks to...
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Thank you!
May 4. 2012 | Comments
()
Thank you to everyone that has taken the time to sign my petition in support of MSK patients worldwide. At the time of this blog entry, we have 406 signatures. This is amazing, considering that most people have never heard of MSK! I wouldn't have made it this far without you, and I am extremely grateful for what you have contributed so far. While this is a milestone, we still have much more work to do. I urge you to continue to promote the petition every time the opportunity presents itself, using every outlet you have available - email, Facebook, MySpace, Twitter, etc. I need to reach at least 500 signatures, and of course more would be better. If MSK is going to get the national attention it deserves, we must all come together as One Voice. I would like to take this opportunity to publicly thank Mr. Radley Balko of the "Huffington Post" for taking the time to interview me for Part 2 of his series on prescription pain medications. This article, entitled "The New Panic Over...
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