There are a number of resources that have proven helpful to other patients. The Foundation does not sponsor any of the following resources; we are only hoping to provide patients with the most information possible. If you have a resource you think should be included on this page, let us know!
Health and Wellness Resources
Between 130-260 people contract GBS from receiving a flu shot in America each year. The National Vaccine Injury Compensation Program was created to help patients who can link their GBS to a vaccination that they received. Check out a story about this on NPR.
The software that Stephen Hawking uses to speak via a synthesized voice on his computer has been released freely on the internet. All you need is a computer with Windows XP or higher and a webcam. This could be very helpful for patients unable to use their voice.
The Foundation also can provide you with communication cards, specially designed for use by GBS and CIDP patients in hospital settings. Contact firstname.lastname@example.org to obtain a copy.
The Johns Hopkins Neurosurgery Medical Second Opinion Program provides timely second opinions (for a fee) on neurological conditions and neurosurgery from leading experts without requiring you to spend time and money on traveling.
Lotsa Helping Hands powers online caring Communities that help restore health and balance to caregivers’ lives. The free service brings together caregivers and volunteers through online Communities that organize daily life during times of medical crisis or caregiver exhaustion in neighborhoods and communities worldwide.
Understanding Your Conditions
PolyNeuroExchange provides relevant and up-to-date information about the diagnosis and treatment of the various peripheral neuropathies. Recent relevant additions include:
- “Subcutaneous Immunoglobulin in Multifocal Motor Neuropathy,” Hans Katzberg, MD (slides)
- “Incidence of GBS and CIDP following influenza vaccination,” Peter Donofrio, MD (slides)
- “Dosing schedules for IVIG: The use of an algorithm as a suggestion for personalized dosing”, Dr. Michael Lunn, PhD (slides)
- “Subcutaneous Immunoglobulin: Feasibility and Safety in Neuromuscular Diseases, Zaeem Siddiqi, MD (poster)
- “Subcutaneous Immunoglobulin in responders to Intravenous Immunoglobulins with Chronic Inflammatory Demyelinating Polyradiculoneuropathy,” Nabil Moumane, MD (poster)
IG Living has informative resources that can help to solve the acute problems of availability, affordability and safety of IG products, as well as help in understanding how to manage a life with chronic illness. This website also features an Ask the Experts Q&A column as well as a Patient Advocate you can speak with about various issues.
This article describes the therapeutic, pharmaceutical, cost, and administrative considerations behind choosing the right IG product for you. This is a great resource to check out if you receive IVIg regularly.