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Wednesday, May 27, 2009
GBS/CIDP Article from Cooma Victoria Australia!
There are some typo errors and some innocent mistakes but you will get the message. It's an Article that showed up on my face book profile from a good friend "Kim". Mark your calenders for June 1st GBS/CIDP day and in some areas it's GBS/CIDP week. I'll check into it but in the mean time I wanted to get this out asap! Enjoy!
A deceptive disorder
JOHN BANNON
26/05/2009 12:34:00 PM
June 1 marks Guillain-Bare Syndrome (GPS) and Chronic Inflammatory Demyelinating Peripheral Neuropathy (CIPD) Awareness Day.
The purpose of the day is to educate the public and health care professionals to the plight of patients with these disorders.
GBS is a rare paralysing and potentially catastrophic disorder of the peripheral nerves. Many patients with GBS find themselves in an intensive care unit unable to walk or talk and although most recover many are left with residual physical deficits.
GBS comes on quickly and can fully paralyse a person and some may become totally dependant on life support for their breathing. GBS attacks the myelin coating of the nerves and so sufferers become so paralysed they are unable to blink.
People can be struck down with GBS from six months to 98 years of age and is just as common in males as it is in females. GBS can affect anyone regardless of nationality or race.
CIDP is a similar but chronic form of GBS that slowly destroys the nerves.
The nerves are healed by receiving injections of intragram that is an extract a bi-product of blood and plasma.
Long time sufferer of CIDP Cooma local Gayle Harding said it is a very scary time for people who have the disease.
“It is a frustrating disease to have because you look normal but you have no strength in your arms and your legs don’t work,” she said.
She said to watch out for the warning signs and in some respects it is like having chronic fatigue syndrome.
“You have weakness in your hands and feet and pins and needles so doing things like picking up paper, sewing, cross stitch and playing tennis become almost impossible,” she said.
Ms Harding said one of the worst parts about CIDP is that it can re-occur.
“I have had one bad relapse during the nine years of having the disorder which made me housebound and unable to drive,” she said.
The key to preventing GPS and CIDP is early detection. There are support groups within Australia from all states and territories including Cooma. For more information call the inflammatory neuropathy support group of Victoria on 97073278 or 9802 5313.
A deceptive disorder
JOHN BANNON
26/05/2009 12:34:00 PM
June 1 marks Guillain-Bare Syndrome (GPS) and Chronic Inflammatory Demyelinating Peripheral Neuropathy (CIPD) Awareness Day.
The purpose of the day is to educate the public and health care professionals to the plight of patients with these disorders.
GBS is a rare paralysing and potentially catastrophic disorder of the peripheral nerves. Many patients with GBS find themselves in an intensive care unit unable to walk or talk and although most recover many are left with residual physical deficits.
GBS comes on quickly and can fully paralyse a person and some may become totally dependant on life support for their breathing. GBS attacks the myelin coating of the nerves and so sufferers become so paralysed they are unable to blink.
People can be struck down with GBS from six months to 98 years of age and is just as common in males as it is in females. GBS can affect anyone regardless of nationality or race.
CIDP is a similar but chronic form of GBS that slowly destroys the nerves.
The nerves are healed by receiving injections of intragram that is an extract a bi-product of blood and plasma.
Long time sufferer of CIDP Cooma local Gayle Harding said it is a very scary time for people who have the disease.
“It is a frustrating disease to have because you look normal but you have no strength in your arms and your legs don’t work,” she said.
She said to watch out for the warning signs and in some respects it is like having chronic fatigue syndrome.
“You have weakness in your hands and feet and pins and needles so doing things like picking up paper, sewing, cross stitch and playing tennis become almost impossible,” she said.
Ms Harding said one of the worst parts about CIDP is that it can re-occur.
“I have had one bad relapse during the nine years of having the disorder which made me housebound and unable to drive,” she said.
The key to preventing GPS and CIDP is early detection. There are support groups within Australia from all states and territories including Cooma. For more information call the inflammatory neuropathy support group of Victoria on 97073278 or 9802 5313.
Sunday, May 24, 2009
Casting Crowns A wonderful Video and Song
I was just having a God moment. He reminds me it is not what I have done or will do.
It is because my God is in control of everything. I love Him so!
I hope you enjoy it as much as I do! Please continue to scroll down and watch the other video's I have posted today! In Spite of my health problems I still love life and I still love Christ!
It is because my God is in control of everything. I love Him so!
I hope you enjoy it as much as I do! Please continue to scroll down and watch the other video's I have posted today! In Spite of my health problems I still love life and I still love Christ!
Neuropathy Action Foundation Awareness Day!
The neuropathy action foundation is having there 3rd annual awareness day on June 25.
You can get all the info at: www.neuropathyaction.org
It is being held in Sacramento and folks are coming from all parts of the country!
Everyone is welcome!
I HOPE to seeing you there!
Best regards,
David Hines
You can get all the info at: www.neuropathyaction.org
It is being held in Sacramento and folks are coming from all parts of the country!
Everyone is welcome!
I HOPE to seeing you there!
Best regards,
David Hines
Saturday, May 23, 2009
Tuesday, May 19, 2009
STAMP OUT NEUROPATHY !
Join Us! Let's help each other!
At this very moment, there are millions of Americans suffering from the effects of peripheral neuropathy. It may be you, a loved one, a friend or a neighbor. We are all affected by neuropathy.
Now is the time to finally give a strong united voice for the neuropathy community. Now is the time to demand that neuropathy be recognized and known across the country. Now is the time to demand action to ensure better diagnosis and treatment. In our own lives, we all can help.
The Neuropathy Association, the leading national non-profit organization representing the neuropathy community, will be launching the Stamp Out Neuropathy Campaign this April and we need your support. We want to raise an additional $150,000 during April and May to help the Association expand its educational outreach and scientific research efforts.
It’s EASY to Help:
If you haven’t already done so, we ask that you join us and become a member through the Stamp Out Neuropathy Campaign:
Make your contribution to the Stamp Out Neuropathy Campaign
Recruit others to support our efforts to help the neuropathy community. It is a chance for you to tell them how important the cause is to defeat this disease:
Email your friends and loved ones to help Stamp Out Neuropathy
Thousands of those affected by neuropathy across the country including The Neuropathy Association’s staff team and volunteer board of directors will be writing to their friends, family, and colleagues to ask them to join the Stamp Out Neuropathy Campaign.
Your participation is vital! With more support, especially during these tough economic times, we will be able to fund more neuropathy-specific scientific research that could one day lead to a cure and halt the progression of the disease.
To learn more, contact Doug Olson at The Neuropathy Association at dolson@neuropathy.org,60 East 42nd Street, New York, NY 10165 or (212) 692-9442.
At this very moment, there are millions of Americans suffering from the effects of peripheral neuropathy. It may be you, a loved one, a friend or a neighbor. We are all affected by neuropathy.
Now is the time to finally give a strong united voice for the neuropathy community. Now is the time to demand that neuropathy be recognized and known across the country. Now is the time to demand action to ensure better diagnosis and treatment. In our own lives, we all can help.
The Neuropathy Association, the leading national non-profit organization representing the neuropathy community, will be launching the Stamp Out Neuropathy Campaign this April and we need your support. We want to raise an additional $150,000 during April and May to help the Association expand its educational outreach and scientific research efforts.
It’s EASY to Help:
If you haven’t already done so, we ask that you join us and become a member through the Stamp Out Neuropathy Campaign:
Make your contribution to the Stamp Out Neuropathy Campaign
Recruit others to support our efforts to help the neuropathy community. It is a chance for you to tell them how important the cause is to defeat this disease:
Email your friends and loved ones to help Stamp Out Neuropathy
Thousands of those affected by neuropathy across the country including The Neuropathy Association’s staff team and volunteer board of directors will be writing to their friends, family, and colleagues to ask them to join the Stamp Out Neuropathy Campaign.
Your participation is vital! With more support, especially during these tough economic times, we will be able to fund more neuropathy-specific scientific research that could one day lead to a cure and halt the progression of the disease.
To learn more, contact Doug Olson at The Neuropathy Association at dolson@neuropathy.org,60 East 42nd Street, New York, NY 10165 or (212) 692-9442.
The Christopher and Dana Reeve Paralysis Act
Washington, Jan 8 - Congresswoman Mary Bono Mack (R-CA) today joined Congresswoman Tammy Baldwin (D-WI) and Congressmen Jim Langevin (D-RI) and Gus Bilirakis (R-FL) in introducing the Christopher and Dana Reeve Paralysis Act, which will help improve the lives of and hasten better treatments and cures for people living with paralysis. “I am proud to join my colleagues in this bipartisan effort to enhance research on paralysis and improve quality of life for the many individuals living with this condition and other mobility impairments,” said Rep. Bono Mack. “The possibilities of medical science are endless, and as we look to bring help and healing to these individuals, it is essential that we coordinate research efforts on a national level and continue to work with organizations like the Christopher and Dana Reeve Foundation. Through this effort, we pay tribute to Christopher and Dana Reeve, who were tireless advocates on behalf of all people living with paralysis,” Bono Mack said. “We honor the activism of Christopher and Dana Reeve with this bipartisan effort to better treat and, we hope, cure paralysis and other serious motor impairments,” said Congresswoman Baldwin. “Chris and Dana used their visibility to work on behalf of families in all parts of the country who face the challenges of paralysis and impaired mobility. This legislation is part of their legacy and I’m hopeful that it will become law in this session of Congress,” Baldwin said. “The Christopher and Dana Reeve Foundation is extremely grateful to Representatives Tammy Baldwin, Mary Bono Mack, James Langevin and Gus Bilirakis for introducing this important legislation in Christopher and Dana’s honor. This critical initiative will advance research into cures and treatments for paralysis as well as improve the quality of life for those already living with the disability,” said Peter T. Wilderotter, President and CEO, Christopher and Dana Reeve Foundation. “Advancements are made every day in spinal cord injury research, but enacting the Christopher and Dana Reeve Paralysis Act will help to quickly and efficiently stimulate even more progress. We, at the Christopher and Dana Reeve Foundation, urge quick passage of the Act in Congress,” Wilderotter said. The legislation, named for the actor who was paralyzed in a riding accident and his wife who turned adversity into activism, seeks to avert redundancies and encourage collaborative research in paralysis and improving the quality of life for people living with paralysis and mobility impairments from any cause -- stroke, ALS, spinal cord injuries, and others. In the last session of Congress, the bill passed the House of Representatives, but failed to advance in the Senate. All four members of Congress pledged to work diligently to ensure that the bill becomes law this year. “I am pleased to join my colleagues in a renewed effort to pass this legislation in the 111th Congress. It is critical to help people with disabilities achieve and maintain their independence and to ensure that we are using the best research and technology to improve their quality of life,” said Rep. Langevin, who is the only spinal cord injured Member of Congress. “On a personal note, Chris and Dana were dear friends and it is now up to all of us to move forward and continue their legacy by seeing this bill signed into law,” Langevin said. “I am proud to be an original co-sponsor of this vital legislation and am happy to see that it is garnering bi-partisan support at its inception,” said Congressman Bilirakis. “Unfortunately, millions of Americans suffer from paralysis and mobility impairment. These individuals struggle each day to perform even the most basic of tasks that many of us take for granted. The economic and emotional impact this impairment has on their lives, and the lives of those who care for them, is staggering. I urge all my colleagues in the House to work together to pass this bill so America can make a comprehensive, coordinated effort to further advance paralysis research,” Bilirakis said. The Christopher and Dana Reeve Paralysis Act has three components that support and enhance paralysis research, rehabilitation, and quality of life programs: • Paralysis Research - Expands research on paralysis at the National Institutes of Health (NIH). This will encourage collaborative research by connecting scientists conducting similar work to further enhance understanding and speed discovery of better treatments and cures. • Paralysis Rehabilitation and Care - Builds on research to enhance daily function for people with paralysis including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation. • Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities - Works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities.
HR 2002 The Medicare patient IVIg access act of 2009
WASHINGTON, April 22 Members of Congress and patient advocacy groups including The Neuropathy Association announced today the introduction of new legislation - H.R. 2002, Medicare Patient IVIG Access Act of 2009 - meant to remedy inadequate Medicare reimbursements that currently restrict patient access to Intravenous Immune Globulin (IVIG), a life-saving and life-enhancing therapy for many primary immunodeficiency diseases; chronic lymphocytic leukemia; Kawasaki disease; idiopathic thrombocytopenic purpura; autoimmune and neurological conditions such as chronic inflammatory demyelinating polyneuropathy (CIDP), Guillain-Barre syndrome, myasthenia gravis, myositis, and multiple sclerosis, just to name a few.
Sponsored by Reps. Israel, Brady and Schwartz, this bill is similar to legislation introduced by Sens. Kerry and Alexander in March of this year. Passage of this legislation would benefit Americans nationwide for whom IVIG is a necessary therapy to help them live with their primary immunodeficiency disease, neurological, autoimmune or other rare chronic conditions and illnesses.
"For those suffering with immune-deficiency disorders, IVIG is a life-saving and life-sustaining treatment. But because of inadequate Medicare coverage, patients are suffering," said Rep. Steve Israel. "We must fix the insufficient coverage Medicare provides for IVIG treatment, which is why I'm sponsoring legislation to help get these patients the care they need."
"Access for those who rely on IVIG therapy to sustain a normal life is an issue that must be addressed, and we are doing so by introducing this bill," said Rep. Kevin Brady. "Through my work with patients and families living with conditions that rely on IVIG, the access issue has become very close to me personally and a cookie-cutter approach like Medicare can be dangerous to this unique treatment."
The Neuropathy Association along with eighteen patient advocacy groups and health care professional organizations, including the Immune Deficiency Foundation and the Alliance for Plasma Therapies, already have endorsed the bill via a joint letter of support, and IVIG patients and caretakers echoed that support while sharing their personal struggles in trying to access IVIG therapy during a briefing for stakeholders today. Special guests and patient advocates included Lt. Col. Eugene B. Richardson, ret., a Neuropathy Association support group leader and chronic inflammatory demyelinating polyneuropathy (CIDP) patient; Terri Cerda, who, together with her two young daughters, battles combined immunodeficiency disease and whose family will be featured on the May 10 episode of ABC's "Extreme Makeover: Home Edition," and Nebraska State Senator Abbie Cornett, who has common variable immunodeficiency disease. Other speakers included Jenny Gardner, a patient with common variable immunodeficiency and Craig Orfield, staff of Senator Enzi who has idiopathic thrombocytopenic purpura.
“No patient should ever have to fear for their lives or their livelihoods because, suddenly, a life-sustaining treatment is taken away from them,” said Tina Tockarshewsky, president and CEO of The Neuropathy Association. “To have this legislation unanimously endorsed by so many disease groups means the patient community believes we finally have within our grasp a true fix to end of years of suffering. We thank Representatives Israel, Brady and Schwartz for their leadership in addressing this problem, and we urge Congress to resolve this access emergency before even more patients are denied access to their treatments.”
"Since 2005, patient access to IVIG has diminished, and Medicare beneficiaries throughout the country have experienced major health problems because of reimbursement reductions," said Marcia Boyle, founder and president of the Immune Deficiency Foundation. "We are grateful for the support of Representatives Israel, Brady and Schwartz and their sponsorship of this critical legislation that is designed to restore access to this vital therapy, and we are heartened by the overwhelming support from the patient advocacy community."
"Today is an unprecedented day to see so many different disease groups come together as a unified voice to strongly urge Congress to fix the unintended consequence of the Medicare Modernization Act which has caused Medicare beneficiaries to lose access to their lifesaving plasma therapy, IVIG, and has caused detrimental consequences to their health," said Michelle Vogel, executive director of the Alliance for Plasma Therapies. "We applaud Representatives Israel, Brady and Schwartz for championing this issue to restore patient access to this vital therapy in all sites of care."
About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. To learn more about IDF, visit http://www.primaryimmune.org/
About the Alliance for Plasma Therapies
The Alliance for Plasma Therapies is a national non-profit organization established to provide a unified, powerful voice of patient organizations, healthcare providers and industry leaders to educate about the diseases that rely on plasma derived therapies and advocate for fair access to plasma therapies for patients who benefit from their lifesaving effects. To learn more about the Alliance, visit http://www.plasmaalliance.org/.
Patient Advocacy Organizations and Professional Societies Supporting the Medicare Patient IVIG Access Act of 2009
Immune Deficiency Foundation, Alliance for Plasma Therapies, American Academy of Asthma, Allergy and Immunology, American Autoimmune Related Diseases Association, American Partnership for Eosinophilic Disorders, A-T Children's Project, Clinical Immunology Society, Foundation for Peripheral Neuropathy, GBS/CIDP Foundation International, Infusion Nurses Society, International Pemphigus and Pemphigoid Foundation, Jeffrey Modell Foundation, The Myositis Association, National Patient Advocate Foundation, The Neuropathy Association, Neuropathy Action Foundation, Patient Services Inc., and Platelet Disorder Support Association.
Sponsored by Reps. Israel, Brady and Schwartz, this bill is similar to legislation introduced by Sens. Kerry and Alexander in March of this year. Passage of this legislation would benefit Americans nationwide for whom IVIG is a necessary therapy to help them live with their primary immunodeficiency disease, neurological, autoimmune or other rare chronic conditions and illnesses.
"For those suffering with immune-deficiency disorders, IVIG is a life-saving and life-sustaining treatment. But because of inadequate Medicare coverage, patients are suffering," said Rep. Steve Israel. "We must fix the insufficient coverage Medicare provides for IVIG treatment, which is why I'm sponsoring legislation to help get these patients the care they need."
"Access for those who rely on IVIG therapy to sustain a normal life is an issue that must be addressed, and we are doing so by introducing this bill," said Rep. Kevin Brady. "Through my work with patients and families living with conditions that rely on IVIG, the access issue has become very close to me personally and a cookie-cutter approach like Medicare can be dangerous to this unique treatment."
The Neuropathy Association along with eighteen patient advocacy groups and health care professional organizations, including the Immune Deficiency Foundation and the Alliance for Plasma Therapies, already have endorsed the bill via a joint letter of support, and IVIG patients and caretakers echoed that support while sharing their personal struggles in trying to access IVIG therapy during a briefing for stakeholders today. Special guests and patient advocates included Lt. Col. Eugene B. Richardson, ret., a Neuropathy Association support group leader and chronic inflammatory demyelinating polyneuropathy (CIDP) patient; Terri Cerda, who, together with her two young daughters, battles combined immunodeficiency disease and whose family will be featured on the May 10 episode of ABC's "Extreme Makeover: Home Edition," and Nebraska State Senator Abbie Cornett, who has common variable immunodeficiency disease. Other speakers included Jenny Gardner, a patient with common variable immunodeficiency and Craig Orfield, staff of Senator Enzi who has idiopathic thrombocytopenic purpura.
“No patient should ever have to fear for their lives or their livelihoods because, suddenly, a life-sustaining treatment is taken away from them,” said Tina Tockarshewsky, president and CEO of The Neuropathy Association. “To have this legislation unanimously endorsed by so many disease groups means the patient community believes we finally have within our grasp a true fix to end of years of suffering. We thank Representatives Israel, Brady and Schwartz for their leadership in addressing this problem, and we urge Congress to resolve this access emergency before even more patients are denied access to their treatments.”
"Since 2005, patient access to IVIG has diminished, and Medicare beneficiaries throughout the country have experienced major health problems because of reimbursement reductions," said Marcia Boyle, founder and president of the Immune Deficiency Foundation. "We are grateful for the support of Representatives Israel, Brady and Schwartz and their sponsorship of this critical legislation that is designed to restore access to this vital therapy, and we are heartened by the overwhelming support from the patient advocacy community."
"Today is an unprecedented day to see so many different disease groups come together as a unified voice to strongly urge Congress to fix the unintended consequence of the Medicare Modernization Act which has caused Medicare beneficiaries to lose access to their lifesaving plasma therapy, IVIG, and has caused detrimental consequences to their health," said Michelle Vogel, executive director of the Alliance for Plasma Therapies. "We applaud Representatives Israel, Brady and Schwartz for championing this issue to restore patient access to this vital therapy in all sites of care."
About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. To learn more about IDF, visit http://www.primaryimmune.org/
About the Alliance for Plasma Therapies
The Alliance for Plasma Therapies is a national non-profit organization established to provide a unified, powerful voice of patient organizations, healthcare providers and industry leaders to educate about the diseases that rely on plasma derived therapies and advocate for fair access to plasma therapies for patients who benefit from their lifesaving effects. To learn more about the Alliance, visit http://www.plasmaalliance.org/.
Patient Advocacy Organizations and Professional Societies Supporting the Medicare Patient IVIG Access Act of 2009
Immune Deficiency Foundation, Alliance for Plasma Therapies, American Academy of Asthma, Allergy and Immunology, American Autoimmune Related Diseases Association, American Partnership for Eosinophilic Disorders, A-T Children's Project, Clinical Immunology Society, Foundation for Peripheral Neuropathy, GBS/CIDP Foundation International, Infusion Nurses Society, International Pemphigus and Pemphigoid Foundation, Jeffrey Modell Foundation, The Myositis Association, National Patient Advocate Foundation, The Neuropathy Association, Neuropathy Action Foundation, Patient Services Inc., and Platelet Disorder Support Association.
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