We have a new member and her name is Regine.
Regine developed adhesive arachnoiditis after a lumbar tap in February. Regine resides in Germany. She would appreciate anyone that would like to email her their experience with arachnoiditis.
You may email Regine at heuserre@yahoo.de
LWA
Wednesday, June 17, 2009
Thursday, June 11, 2009
How to view Kovacik progress
We received some comments regarding where to view progress on our cofounder, Karen Kovacik. Unfortunately we made the assumption that our readers would know where to find Karen's bio.
Please understand LWA does not endorse any particular treatment. While LWA desires to make information available to all, LWA is not advocating any particular protocol.
To view Karen's progress please see http://www.lifewitharachnoiditis.com/cofounderskaren.html
In order to get to up-to-date news you must go through the bio information links. It is only fair you read the illness path prior to jumping to the progress path.
Thank you for your understanding.
LWA
Please understand LWA does not endorse any particular treatment. While LWA desires to make information available to all, LWA is not advocating any particular protocol.
To view Karen's progress please see http://www.lifewitharachnoiditis.com/cofounderskaren.html
In order to get to up-to-date news you must go through the bio information links. It is only fair you read the illness path prior to jumping to the progress path.
Thank you for your understanding.
LWA
Wednesday, June 10, 2009
Welcome Two New Members June 10, 2009
Welcome to our newest members:
Fr Stephen Petrovich - Diagnosis, adhesive arachnoiditis. Needs long term care advice and possible social worker assistance. Please write to him at ukiebishop@gmail.com
Hollie Sanderson - Diagnosis, spinal adhesive arachnoiditis. Hollie has requested support. Please write to her at email crystalblu76@aol.com
LWA
Fr Stephen Petrovich - Diagnosis, adhesive arachnoiditis. Needs long term care advice and possible social worker assistance. Please write to him at ukiebishop@gmail.com
Hollie Sanderson - Diagnosis, spinal adhesive arachnoiditis. Hollie has requested support. Please write to her at email crystalblu76@aol.com
LWA
Bio Update - Cofounder
For those interested in an update on the progress of Karen Kovacik, Cofounder, please go to her bio page and see Progress Notes. Her bio has been updated reflecting progress to June 9, 2009.
Tuesday, June 9, 2009
Modification to American Pain Foundation Post of 6/8/09 - URGENT
Pasted in from American Pain Foundation (this is just the top portion - they are modifying yesterday's alert):
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
Correction: We made a mistake in the Alert we sent yesterday by identifying the FDA as the “Federal Drug Administration” instead of the “Food and Drug Administration.” We apologize for the error. Please forward this alert to your networks.
The Food and Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
Correction: We made a mistake in the Alert we sent yesterday by identifying the FDA as the “Federal Drug Administration” instead of the “Food and Drug Administration.” We apologize for the error. Please forward this alert to your networks.
The Food and Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
Feeling Better
Hello LWA,
Challenges for us come in many forms. I have been pretty challenged lately. Busy battling an infection, and then another. Please accept my apologies for not being available. I am busy going through several hundred e-mails and blog posts. Its kind of like triage, trying to get to the urgent ones first. I will get to all of them.
I am impressed with Karen's work on keeping us posted on her treatments, and posting important news we all need to be made aware of.
This is YOUR blog. I would like to hear from anyone that has Cauda Equina Syndrome along with Adhesive Arachnoiditis. Like myself these folks have some special requirements as far a pain relief. So if you have these two diseases/disorders I would like to hear from you at jon.mchann@gmail.com
I also would like to hear from anyone who has run across data or articles linking together Arachnoiditis with M.S. or other Immune System related issues.
For those of you that are wondering from my pictures on the web page, I raise Alpacas and have had 2 boys and 1 girl added to the head count and moms and babies (crias) are all well. Thank you for your prayers during my illnesses. God bless us all as we try to live in his likeness while battling our diseases and disorders.
God Bless
Jon McHann
Challenges for us come in many forms. I have been pretty challenged lately. Busy battling an infection, and then another. Please accept my apologies for not being available. I am busy going through several hundred e-mails and blog posts. Its kind of like triage, trying to get to the urgent ones first. I will get to all of them.
I am impressed with Karen's work on keeping us posted on her treatments, and posting important news we all need to be made aware of.
This is YOUR blog. I would like to hear from anyone that has Cauda Equina Syndrome along with Adhesive Arachnoiditis. Like myself these folks have some special requirements as far a pain relief. So if you have these two diseases/disorders I would like to hear from you at jon.mchann@gmail.com
I also would like to hear from anyone who has run across data or articles linking together Arachnoiditis with M.S. or other Immune System related issues.
For those of you that are wondering from my pictures on the web page, I raise Alpacas and have had 2 boys and 1 girl added to the head count and moms and babies (crias) are all well. Thank you for your prayers during my illnesses. God bless us all as we try to live in his likeness while battling our diseases and disorders.
God Bless
Jon McHann
Monday, June 8, 2009
American Pain Foundation Alert & Call to Action!
This is pasted in from an Action Alert received today from the American Pain Foundation:
ACTION ALERT
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Go to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=090000648095e49e for FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)Food and Drug Administration5630 Fishers Lane, Room 1061 Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter to advocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
FDA's REMS Information - http://www.fda.gov/OHRMS/DOCKETS/98fr/E9-8992.htm
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation
ACTION ALERT
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Go to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=090000648095e49e for FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)Food and Drug Administration5630 Fishers Lane, Room 1061 Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter to advocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
FDA's REMS Information - http://www.fda.gov/OHRMS/DOCKETS/98fr/E9-8992.htm
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation
Subscribe to:
Posts (Atom)