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I’ve just been diagnosed

Yes, a diagnosis like this is scary to say the least. Disbelief is followed by denial and then come the struggles of adapting to this new life and reality. Your family, loved ones and friends all go through it in their way too.

You go into a state of mourning for the life you had, the plans and promises you made for the future, your body, mobility…general health. All of this is normal and ok; it’s part of the process towards acceptance.

Understanding Your Diagnosis

Learn what your diagnosis means, how it may affect you, and the steps you can take to manage your care with confidence.

So how can I help myself through this difficult time?

Realise quickly that your condition doesn’t make you less of a person, there is nothing to be ashamed of. None of this is your fault. Life has changed. It’s awful. But you are still you, you are still worthy and you are still loved (even if it doesn’t feel like it some days).

It’s ok to ask for help, and you should. Aside from this website and our WhatsApp group, you’ll find us across Social Media. There are many other groups and support pages out there, run by people who have these conditions and understand them.

Instagram
LinkedIn

Get through the denial as quickly as you can. Some of our members delayed early treatment because of this and regretted it. The sooner you start helping yourself get the right help, the better.

Build a support team around you. Your Neurologist. Other specialists as needed (Nephrologist, Nutritionist etc.). Biokinetics. Physiotherapy and a Psychologist. Getting your head around your diagnosis helps. Physical and Aqua-therapy helps some people. Diet and nutrition plays a role.

Register. We are an Allied Partner of GBS-CIPD Foundation International, the global standard in support for GBS-CIDP-MNN. If you register with them, they get a better idea of the problem globally and work with Sponsors, Centres of Excellence, Allied Partners and Volunteers all over the world to find solutions for us. It’s completely anonymous, just a few details are needed. Please register here.

FOR INFORMATION PURPOSES ONLY – ALWAYS SEEK THE ADVICE OF A MEDICAL PROFESSIONAL

So how can I help myself through this difficult time?

Realise quickly that your condition doesn’t make you less of a person, there is nothing to be ashamed of. None of this is your fault. Life has changed. It’s awful. But you are still you, you are still worthy and you are still loved (even if it doesn’t feel like it some days).

It’s ok to ask for help, and you should. Aside from this website and our WhatsApp group, you’ll find us across Social Media. There are many other groups and support pages out there, run by people who have these conditions and understand them.

Instagram
LinkedIn

Get through the denial as quickly as you can. Some of our members delayed early treatment because of this and regretted it. The sooner you start helping yourself get the right help, the better.

Build a support team around you. Your Neurologist. Other specialists as needed (Nephrologist, Nutritionist etc.). Biokinetics. Physiotherapy and a Psychologist. Getting your head around your diagnosis helps. Physical and Aqua-therapy helps some people. Diet and nutrition plays a role.

Register. We are an Allied Partner of GBS-CIPD Foundation International, the global standard in support for GBS-CIDP-MNN. If you register with them, they get a better idea of the problem globally and work with Sponsors, Centres of Excellence, Allied Partners and Volunteers all over the world to find solutions for us. It’s completely anonymous, just a few details are needed. Please register here.

FOR INFORMATION PURPOSES ONLY – ALWAYS SEEK THE ADVICE OF A MEDICAL PROFESSIONAL

South African Whatsapp Group

We have a WhatsApp Group, where members find support, answers to questions and understanding from people in a similar/same position as you. We come from all walks of life, from all over South Africa. If you’d like to benefit from being a part of this group, please send your full name, diagnosis and cell phone number to: info@gbs-cidp.co.za

South African Whatsapp Group

We have a WhatsApp Group, where members find support, answers to questions and understanding from people in a similar/same position as you. We come from all walks of life, from all over South Africa. If you’d like to benefit from being a part of this group, please send your full name, diagnosis and cell phone number to: info@gbs-cidp.co.za

Medical & Support Professionals

COMING SOON

We are in the process of building a network of medical and medical support professionals that our members have personally worked with and have experience of. If you’d like to put someone forward, please email: info@gbs-cidp.co.za

Each of these resources are placed here with the relevant permissions, in compliance with the POPIA Act. They are recommendations made by members based on personal experience, and not directly from GBS-CIDP Foundation South Africa.

Testimonials and stories

Please share a short story of your journey, to help others, for them to understand or to take comfort from. Only your first name and the story will be published here, no personal details whatsoever will ever be published or shared.

Submit Story

FOR INFORMATION PURPOSES ONLY
– ALWAYS SEEK THE ADVICE OF A MEDICAL PROFESSIONAL

“I found my diagnosis very overwhelming at first. Kept hoping for a miracle. Lived in denial. But as soon as I started researching, engaging with my neurologist and building a medical team around me (Biokinetics, Physiotherapy and Psychologist), I started feeling better. Action and purpose overcome fear and uncertainty”

Michael

“The thing we forget while we are going through so much, is that it’s happening to our partners and families too. They go through the same sense of mourning  and loss, and often become overwhelmed. My husband and I were having problems navigating this new reality, so I sent him to see a Psychologist. That made a huge difference, I really recommend it for those closest to you”

Rachel

“Diagnosed with CIDP in 2024, my complicated journey has given me first-hand insight into the fears and challenges of navigating a rare and often misunderstood condition, including the physical, emotional and practical impact it has on individuals and their families. Finding like-minded support from people who are going through the same thing, and their shared understanding, really helped me to get perspective”

Mel

“ In recent years, I have increasingly encountered patients presenting with auto-immune, neurological based conditions and inflammatory neurological disorders, including GBS and CIDP. As a biokineticist, my role is not to diagnose CIDP or prescribe immunological treatment. My role is to support patients in maintaining and improving physical function, managing deconditioning, optimising strength and endurance where appropriate, and working towards independence and meaningful participation.”

Gina

“Whilst recovering from a Distal Gastrectomy for Gastric Cancer in 2021, I was hospitalised, mainly in ICU, for 7 months, and eventually diagnosed with the rare, incurable Autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Considering 1st world statistics noted an affliction rate of anywhere between 0,01 and 0,09 per 100 000 people, I recognised that South Africans were largely misdiagnosed or undiagnosed. Despite being wheelchair bound, I recognised a dire need to create awareness of the disease, have a support structure for patients and caregivers, foster education and research opportunities, and lobby law-makers. I thus established the NPO GBS-CIDP SA, to deal with these shortcomings.”

Pravin

Everything is about creativity, it’s part of how I survive life with CIDP. I look at a problem, and before despairing, I ask myself how else can we do this? I find creative ways to move about, brush my teeth and so many other tasks that became hard due to the effects of this disease. Physiotherapy and Biokinetics have helped enormously towards recovering some mobility. My message is to people living with CIDP, GBS or MMN – support each other, build a community – we do not need to go through this alone”

Cindy

Testimonials and stories

Please share a short story of your journey, to help others, for them to understand or to take comfort from. Only your first name and the story will be published here, no personal details whatsoever will ever be published or shared.

Submit Story

FOR INFORMATION PURPOSES ONLY
– ALWAYS SEEK THE ADVICE OF A MEDICAL PROFESSIONAL

“I found my diagnosis very overwhelming at first. Kept hoping for a miracle. Lived in denial. But as soon as I started researching, engaging with my neurologist and building a medical team around me (Biokinetics, Physiotherapy and Psychologist), I started feeling better. Action and purpose overcome fear and uncertainty”

Michael

“The thing we forget while we are going through so much, is that it’s happening to our partners and families too. They go through the same sense of mourning  and loss, and often become overwhelmed. My husband and I were having problems navigating this new reality, so I sent him to see a Psychologist. That made a huge difference, I really recommend it for those closest to you”

Rachel

“Diagnosed with CIDP in 2024, my complicated journey has given me first-hand insight into the fears and challenges of navigating a rare and often misunderstood condition, including the physical, emotional and practical impact it has on individuals and their families. Finding like-minded support from people who are going through the same thing, and their shared understanding, really helped me to get perspective”

Mel

“ In recent years, I have increasingly encountered patients presenting with auto-immune, neurological based conditions and inflammatory neurological disorders, including GBS and CIDP. As a biokineticist, my role is not to diagnose CIDP or prescribe immunological treatment. My role is to support patients in maintaining and improving physical function, managing deconditioning, optimising strength and endurance where appropriate, and working towards independence and meaningful participation.”

Gina

“Whilst recovering from a Distal Gastrectomy for Gastric Cancer in 2021, I was hospitalised, mainly in ICU, for 7 months, and eventually diagnosed with the rare, incurable Autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Considering 1st world statistics noted an affliction rate of anywhere between 0,01 and 0,09 per 100 000 people, I recognised that South Africans were largely misdiagnosed or undiagnosed. Despite being wheelchair bound, I recognised a dire need to create awareness of the disease, have a support structure for patients and caregivers, foster education and research opportunities, and lobby law-makers. I thus established the NPO GBS-CIDP SA, to deal with these shortcomings.”

Pravin

Everything is about creativity, it’s part of how I survive life with CIDP. I look at a problem, and before despairing, I ask myself how else can we do this? I find creative ways to move about, brush my teeth and so many other tasks that became hard due to the effects of this disease. Physiotherapy and Biokinetics have helped enormously towards recovering some mobility. My message is to people living with CIDP, GBS or MMN – support each other, build a community – we do not need to go through this alone”

Cindy