Guillain Barre Syndrome Foundation of Australia in Sydney, Australia | Public & government service

Guillain Barre Syndrome Foundation of Australia

Locality: Sydney, Australia

Add/Update information

Reviews

Tags

• Medical and health
• Non-profit organisation
• Public & government service

24.01.2022 Meeting a GBS patient at Acute Stage... During the acute phase of GBS, a patient may not tolerate, or be unable to participate in active movement still physical and occupational therapy play an important role. Initially, a Plan of Care will likely be more consultative in nature. ... The patient and caregiver should be educated and trained as much as possible by the health professional on the prevention of contractures, DVT and bedsores, as well as proper positioning and the expected course of future rehabilitation: Prolonged hip and knee flexion should be avoided. Change position at least every two hours in bed and perform regular pressure reliefs when sitting; Support weak upper extremities with armrests, a wheelchair tray and/or pillows to prevent stretching of shoulder muscles and joint tissues. Your Healthcare professional will want to learn about the patient’s home life, work demands, interests and support system in order to customize a Plan of Care to their needs. So give as much information as you can. They will anticipate the need for assistive devices and other equipment and be prepared to train the patient and caregivers in their use. Use gentle passive range-of-motion. They will introduce breathing and coughing exercises to maintain good airway exchange. Anyone that touches a patient should communicate clearly with the patient before and during any physical interaction. If you are the caregiver talk to your loved ones team and if you feel uncomfortable or unsure of anything do speak up as they will be more than happy to help.

23.01.2022 IF you or a loved one are diagnosed with GBS after a vaccination as an autoimmune response, you can report your adverse affect with the Therapeutic Goods Administration. Suspected adverse events that occur after having a vaccination can be reported to the TGA. These reports provide important information for the TGA's safety monitoring program. A completed AEFI form can be submitted to the TGA via: (provided in link) https://www.tga.gov.au//national-adverse-events-following-... Then send the form via: Email; [email protected] Fax +61 2 6232 8392 Mail: Therapeutic Goods Administration PO Box 100 Woden ACT 2606 Australia

23.01.2022 SUBTYPES of GBS The Image is a graphic representation of the pattern of symptoms typically observed in the different clinical variants of GBS. Symptoms can be purely motor, purely sensory (rare) or a combination of motor and sensory. ... Symptoms can be localized to specific regions of the body, and the pattern of symptoms differs between variants of GBS Besides classic presentation of GBS, there are 6 clinical variants that are based on the types of nerve fibers involved and predominant mode of fiber injury Mylien or Axon. 1. (AIDP) Acute inflammatory demyelinating polyneuropathy ...is the most common form of GBS, and the term is often used synonymously with GBS. 2. (AMAN), Acute motor axonal neuropathy patients with AMAN have a more rapid progression of weakness resulting in prolonged paralysis and respiratory failure over a few days. 3. (AMSAN) Acute Motor Sensory Axonal Neuropathy ... also affects sensory nerves with severe axonal damage. Recovery is slow and often incomplete. AMAN and AMSAN are associated with C. Jejuni infection. 4. Miller Fisher syndrome (MFS) manifests as a descending paralysis. It usually affects the eye muscles first. 5. Bickerstaff’s brain stem encephalitis (BBE) is a variant of MFS 6. Acute panautonomic neuropathy ...is the most rare variant of GBS, It is associated with a high mortality rate, owing to cardiovascular involvement, and associated dysrhythmias.

21.01.2022 Hi GBSFA Members If you are or were diagnosed with GBS or CIDP in the state of ACT. Please could you message us. Thank you

20.01.2022 GBS also known as getting better slowly. It’s the most frustrating thing in the world being told you have GBS with no real prognosis on when you will return to normality or what your new normal will look like. It’s not a Syndrome you can compare yourself to anyone as everybody’s recovery is different. Please know that you are doing an incredible job even the smallest of things like a slight movement or just a day with less pain is a huge win!!! ... That goes for the carers too who are putting on a brave face everyday whilst feeling extreme highs and lows inside, it takes time to get used your new roles carer patient whilst multitasking your other life roles, children, jobs, bills and everything else that keeps on demanding to be done. So give yourself a big pat on the back for getting this far no matter where you are on your GBS journey...You are all amazing.

15.01.2022 What is Guillain Barre Syndrome (GBS), how is it diagnosed and what is the treatment? GBS is an acute disorder of the peripheral nerves, often preceded by a respiratory infection, the immune system starts attacking itself, causing weakness and often paralysis of the limbs. It is named after two French physicians, Guillain (pronounced Ghee-lan) and Barré (pronounced Bar-ray), who described it in 1916 in two soldiers who were affected by a paralysis but later recovered.... The first symptoms are usually either tingling (pins and needles) or loss of feeling (numbness) beginning in the toes and fingers. Legs feel heavy and wooden, arms feel limp and hands cannot grip or turn things properly. Investigations for diagnosis will normally include blood tests, a lumbar puncture and electromyogram (EMG). GBS is very painful and if not diagnosed quickly can shut down your respiratory system causing death. Once diagnosed treatment includes plasma exchange which is very helpful for severely affected patients in the first week or two of the illness. This increasingly popular treatment is the infusion into a vein via a drip of a human blood product called gamma globulin or intravenous immunoglobulin (IVIG). This is given as a daily dose over three to five days. Put simply, IVIG is a cocktail of ‘good antibodies’ which fights off the ‘bad antibodies’ which are attacking the nerves. If GBS patients cannot walk, or need help to walk, they should receive one of these treatments immediately the diagnosis is made (within 24-48 hrs at most). The longer the delay in starting treatment, the less likely it is to be effective.

13.01.2022 What tests will diagnose #GuillainBarreSyndrome? Three tests are usually used to confirm a diagnosis: Lumbar puncture (spinal tap)The patient is given local anesthetic. Once the anesthetic has taken effect, a needle is inserted between two lower (lumbar) vertebrae and a sample of cerebrospinal fluid is drawn. An elevated level of protein without an increase in the number of white blood cells (WBCs) in the fluid is characteristic of GBS.... Electromyogram (EMG)This is an effective diagnostic tool because it records muscle activity and can show the loss of individual nerve impulses due to the disease's characteristic slowing of nerve responses. Nerve conduction velocity (NCV)This test is performed with EMG, and together, they are often referred to as EMG/NCV studies. NCV records the speed at which signals travel along the nerves. These signals are characteristically slowed in GBS, although the findings may evolve over several weeks. We would love to know...What tests did you have? Did the doctors do the tests quickly? Did you have to fight for them to be done? #gbs #gbsfa #guillainbarresyndrome

12.01.2022 Treatment for GBS The goal of treatment is to lessen the severity of symptoms and keep the patients body functioning while the nervous system recovers. Its recommended all patients with GBS receive one of these treatments within 24-48 hrs at most after diagnosis. On average, these treatments halve the duration of the illness in any individual case. ... Intravenous immunoglobulin (IVIg) IVIg is made from the ‘plasma’ of donated human blood. Put simply, IVIG is a cocktail of ‘good antibodies’ which fights of the ‘bad antibodies’ which are attacking the nerves. Sometimes MULTIPLE rounds of IVIG can be given before improvement is seen. Plasmapheresis / Plasma Exchange Plasmapheresis removes the antibodies attacking the nerves from your blood. Plasma exchange involves being connected to a machine that can separate the blood cells from the fluid or plasma. About 250ml of blood is removed at a time, the plasma is discarded and the blood cells are returned to the patient with clean plasma. The risks of these procedures are extremely small and modern sterilization has eliminated the risk of transmitting unpleasant infections in the clean plasma. However some patients may have a bad reaction to one of the treatments and therefore the Neurologist may try the other therapy not tried. AFTER TREATMENT Most GBS patients after treatment are confined to a hospital bed or in ICU for weeks to months depending on the extent of nerve damage. One day you are in control of your life the next you are in an unfamiliar hospital setting any certainty about the future is suspended. Trapped in your own body and totally dependent. So Mental health of the patient can rapidly decline whilst they have a mind that works but a body that doesn’t. They may be the breadwinner, have children to care for and be extremely worried about external factors. We will explore ways to help a patients MH in future posts. It is important to start Physiotherapy as soon as the doctors think necessary so that patients can regain control and have focus. Physical and occupational therapy are integral parts of the recovery and management of GBS. They help a patient minimize pain, increase strength and endurance and prevent secondary complications. Help repair damage to muscles and joints while improving balance and mobility and restoring functional activity. Which treatment did you receive? What was your experience of it? Was it given in a timely manner? Was it explained to you what it was and did? How many rounds were you given?

11.01.2022 May is Guillain Barre Syndrome (GBS) awareness month. GBS is an autoimmune condition where the peripheral nerves are attacked by the body’s own immune system. T...his causes weakness and paralysis of the limbs. GBS is difficult to diagnose and fatal if left untreated. It took 6 long days for my son Jack to be diagnosed in April 2018. Jack was young, fit and healthy and life was good. He was an electrical apprentice, had a second job, played rugby league, went to the gym and hung out with his mates. This kept Jack busy and he was extremely independent, never asking us for anything. GBS brought that life to a halt almost overnight and Jack was suddenly dependent on others for everything. Doctors could not give any certainty around when Jack would get better, to what extent, or if there would be any permanent damage. Each case is unique and recovery (for the lucky) is different for everyone. There is no cure for GBS and relapse is possible at any time. Watching Jack suffer with GBS is one of the hardest things I've had to do and I've never felt so helpless as a Mum. There were so many unknowns and some very tough and dark times. I spent every spare minute scouring the internet for information and stories of successful recovery. I needed hope that Jack could and would get better. I'm so very happy to say that Jack is now one of those success stories that I so badly needed to hear. A year after not being able to walk or move most of his body, Jack walked to the Mt Kosciusko summit. His recovery included two months in hospital followed by months of physical rehab learning to walk and use his hands again. Jack continues to put in the hard work to get stronger and to where he wants to be. If you, or someone you know is diagnosed with GBS, I hope Jack's story gives you a little bit of the hope I know you'll be looking for. An extremely proud and grateful Mum Visit the Guillain Barre Syndrome Foundation of Australia or http://www.guillainbarresyndrome.org for more information about GBS.

09.01.2022 Read, share around and come visit us!!! This month is Guillain Barre Syndrome awareness month! What is GBS? Short answer is that GBS is an acute disorder of t...he peripheral nerves, often preceded by a respiratory infection, the immune system starts attacking itself, causing weakness and often paralysis of the limbs. All of next week starting Monday 25th May we are raising funds for the Guillain barre syndrome foundation of Australia. Each GBS donut sold all money will go to the GBS foundation! Why are we doing this? Because this is something that is very close to our hearts! Some may know already but my daughter who worked here at donut king for 5 years was diagnosed in 2013 with this condition, within 6 hours she was paralysed from the neck down. She had 4 month old son, My grandson. We didn’t know back then how much GBS was going to change not just Annissa’s life, but our lives as well! Annissa spent over 4 months in hospital learning to walk, sit up, feed herself, and more! We are 6 1/2 years on and Annissa lives with a permanent and lifelong disability, she has had to adapt to her body and what it can and cannot do. Annissa never recovered, she is always trying her best to not let GBS defeat her and it is a struggle. It has affected her life in every way and each day is different than the day before. Annissa chose to become an ambassador for the Guillain barre syndrome foundation of Australia just after her relapse in 2016. Helping others with this condition get through tough times and being there for anyone who has been diagnosed and their families. The community’s support however big or small will be so greatly appreciated! Come in and grab a donut! (Or two or three ) they are $3 each supporting a charity has never tasted sweeter Wristbands are also available for $4 each! See more

08.01.2022 We have been receiving a lot of messages, emails and calls from carers/family members looking to connect with other carers. We would love to host a Zoom call one day or evening for you all to connect, share and support each other. What day of the week would suit you best? What time of Day would best suit you? ... Message us privately or comment below and we will do the rest. We would love for these meets to be face to face when borders re open. XX

06.01.2022 There are two main types of GBS The demyelinating form AIDP. With AIDP the complement system is activated as well as T cells which activate macropsias that in turn damage the myelin. ... The second type is the axonal type, AMAN. The damage is mediated mainly by IgG antibodies and complement against the Axon Both result in injury to peripheral neurons The Pathophysiology of the AMAN variant is possible because the capsule that surrounds Jejuni bacteria and certain viruses contain antigens that are similar in structure to the gangliosides GM1 and GD1. A mounted immune response against these viruses produces antibodies that cross react with the structurally similar gangliosides in the axons of neurons themselves. This cross reactivity is termed Molecular Mimicry. With the AIDP subtypes it is mainly the activated T helper cells then then activate macropsias that do much of the damage to neuron mylien and schwan cells. GBS Guillainbarresyndrome GBSawareness

06.01.2022 https://www.google.com.au//past-vaccine-disasters-show-why

02.01.2022 When is a GBS patient admitted to ICU? Reasons to admit patients to the intensive care unit (ICU) include the following: evolving respiratory distress with imminent respiratory insufficiency,severe autonomic cardiovascular dysfunction (for example, arrhythmia's or marked variation in blood pressure), severe swallowing dysfunction or diminished cough reflex, and rapid progression of weakness. Respiratory distress, including breathlessness at rest or during talking, inability ...to count to 15 in a single breath, use of accessory respiratory muscles, Increased respiratory or heart rate, Abnormal arterial blood gas or pulse oximetry measurements. As up to 22% of patients with GBS require mechanical ventilation within the first week of admission, patients at risk of respiratory failure must be identified as early as possible. The (EGRIS) prognostic tool was developed for this purpose and calculates the probability (190%) that a patient will require ventilation within 1 week of assessment. Risk factors for prolonged mechanical ventilation include the inability to lift the arms from the bed at 1 week after intubation, and an axonal subtype or unexcitable nerves in electrophysiological studies. Early tracheotomy should be considered in patients who have these risk factors. Whilst in ICU the doctors and team will likely perform Chest Physiotherapy that improve lung function and help you breathe better. The image below captures some of the positions you may be put into or have been put into. And an OT can help with speech after a Tracheotomy has been removed. Did you spend time in ICU? Were you ventilated or have a tracheotomy? Share your experience with us.

01.01.2022 Hi All, We hope you re all doing well. We have been quiet on social media recently as we have been focusing our efforts on patient advocacy work. Plus working on some new podcast interviews for you all around the world. We have a request...if you are a parent whose child has been diagnosed with GBS, or has survived GBS and are based in Australia please message us. x