Have you, or a family member been diagnosed with Guillain-Barre Syndrome, (GBS) or perhaps Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?
A diagnosis of either may leave you with a lot of questions -
- I have never heard of these conditions, what does it mean for me and our family?
- We cant comprehend exactly what I have and need more help to understand this condition. I am receiving attentive medical and hospital treatments, but I still feel uncertain as to what lies ahead. How long will I take to recover and where can we go for help?
All these emotions and concerns are very typical in these worrying initial weeks of having a GBS or CIDP diagnosis. Part of the answer will be to seek information, seek support, seek help, seek reassurance through contacting your nearest GBS | CIDP Support Group.
In Australia there are several Support Groups dedicated to supporting GBS or CIDP or any of the several variants, such as Miller Fisher. Initially all help can only commence with an inquiry, whether it is by telephone or email, it is the first step for help. Support groups, similar to our Association, are seldom notified by any hospital, or by their staff of a patients needs with GBS or CIDP. We would wish it otherwise. So the contact to an Association / Support Group must begin with you or your family.
Support groups do help in several ways, firstly by providing that initial human interaction with someone who knows these conditions, who has been there themselves, who listens, who understands, who provides future positives, who encourages, and may be able to suggest ways and means of making that recovery path more tolerable. Information provides strength and confidence when spirits might be at their lowest.
Visitors to Hospitals or Rehab Facility
Visits by recovered GBS or CIDP persons to hospitals, can provide confidence, “that I will make it too” for most new patients. Hospitals do reserve some restrictions on unauthorised visiting of patients without prior permission. However when these restrictions are removed, and with the consent of patient, family and staff, such visitors will have a positive effect for a new patient seeing and believing things will be better in the future, over time.
Meeting others in a Support Group
GBS | CIDP meetings are not only for the newly discharged patient, the GBS | CIDP family encompasses all who are interested and wish to share their own stories and listen to others, whether it happened recently or decades ago. Our Association has an Open Forum at our meetings for anyone interested to come along and discuss their own story. Meeting others with similar conditions, helps to establish a bond of understanding, ‘my issues may be different to their’s - but we still have something in common’.
Our own publication is called “Recovery” – given that name from a patient at one of our very early meetings many years ago. It describes completely what we aim for - Recovery. We feature in Recovery updates of current research, reader stories, and information about meetings and social functions open to all who may be interested. It is sent quarterly to supporting members.