Written by Angela Patton Angela Patton is a member of GBS|CIDP’s Advisory Committee. In 2017, after an eight months struggle for a proper diagnosis, Angela was diagnosed with CIDP. Here is Angela’s story… I was barely able to walk, and struggled during this time in my educational, and professional life. I have been on various…
A Statement from the Foundation Global Medical Advisory Board The Washington Post and New York Times published on July 12, 2021 articles of a report by the FDA regarding cases of purported GBS after receiving the Johnson and Johnson COVID 19 vaccine. Approximately 100 reports of suspected GBS were experienced by 12.8 million subjects who…
June 30, 2020 By Lisa Butler, Executive Director GBS|CIDP Foundation International Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder. Imagine being greeted with the puzzlement…
The IGOS-1000 cohort has now been tested for the main preceding infections and is currently tested for antibodies extensively. We have also recently finalized a study in IGOS on the association between GBS and SARS-CoV-2 during the first 3 months of the pandemic. In my view this study shows the importance of having an ongoing…
Statement on Vaccines and GBS June 18, 2021 There is no evidence at the present time to suggest that ANY of the vaccines is associated with GBS in any significant numbers (with data only on AZ, Pfizer and Moderna from the UK). Multiple international surveillance systems are looking specifically for GBS as it is designated…
Ask The Experts Episode 9 – COVID-19 Vaccines and the GBS|CIDP CommunityFeaturing Dr. Peter Donofrio, Chairman of the Global Medical Advisory Board
The GBS|CIDP Foundation has received many questions about COVID-19 and its relationship to Guillain-Barré syndrome and CIDP.
The FDA is committed to safety and transparency for all Americans using any medicine. As a result of their commitment to safety and transparency, the FDA has decided to include GBS on information about the possible side effects of the Shingrix vaccine for shingles, given to older Americans. This safety warning ONLY applies to one…
By Megan Kaump A diagnosis of GBS, CIDP, or variants is frightening and devastating for anyone, but when a child is diagnosed it adds a very different set of emotions and experiences. It is heart- breaking to see your child go through such challenges and there is the added component of how the child’s schooling…
How do we care for the caregiver? GBS, CIDP, and variants such as MMN, not only affect patients but can have a huge impact on the entire family. Primary caregivers are so focused on caring for the patient, and often barely have time to notice that their own lives have been turned upside (and sideways)…
After holding a GBS Patient Listening session with the FDA in the Summer of 2020, the Foundation has continued to work with key leadership at the FDA to continue bringing the patient voice to their current work. The FDA holds a very special role in the US healthcare system. Their job is to review and…
No instances of CIDP or MMN were seen during clinical trials of the two vaccines. Neither the Centers for Disease Control and Prevention (CDC) nor the Food and Drug Administration (FDA) recommends against administration of the Covid 19 vaccine in patients with CIDP or MMN. One must keep in mind that the Covid Vaccine has…
As a follow up to the Foundation’s published article from Dec. 20, 2020, “An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH,” on January 15, 2021, Neurology Today published the following article “No Excess Risk for Neurologic Events Observed to Date from COVID-19 Vaccines.” Read the full article…
Adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19. mRNA COVID-19 vaccines may be administered to people with underlying medical conditions provided they have not had a severe allergic reaction to any of the ingredients in the vaccine. The following information aims to help people in the…
By Meg Mains The GBS-CIDP Foundation International hosted their FIRST Teen & Young Adult Zoom gathering on December 8th. It was a great way to meet other patients and share their experiences with GBS, CIDP, & variant conditions. Meg Mains, Youth, Teen, & Young Adult Team Lead, and Michael Coleman, YTA Spokesperson hosted the virtual…
Pagination
Spotlight
