Help Fund Our CIDP-GBS-MMN Awareness Story Book

Hi I am Emma (Author/Illustrator) or the book Bree's Like Me. I co-wrote this book with my mother Julie Bell who has lived with CIDP for 29 years. I was 4 at the time she was diagnosed and as a family we have navigated the good, bad and ugly of this disease together. My mother is a true fighter and my role model. Together we created a story to help kids who have CIDP, GBS and MMN or have parents/siblings with CIDP, GBS and MMN understand their diagnoses and be able to talk about it. We will be printing this book for the annual CIDP/GBS Foundation International Symposium. (https://www.gbs-cidp.org/)

We have journey through CIDP for many years as a family and are thrilled to make the dream of publishing this book a reality. We are asking for donations so that we can provide this book printed to families and patient with these diseases at no cost to them.

There will be 3 version of the book one for each of the diseases.

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare disorder of the peripheral nerves characterized by gradually increasing sensory loss and weakness associated with loss of reflexes. The number of new cases per year of CIDP is about 1-2 per 100,000 people, but as the disease can be present in a person for years prior to diagnosis, the prevalence reflecting the accumulation of cases over time may be as high as 9 per 100,000 in some areas. CIDP is caused by damage to the covering of the nerves, called myelin. It can start at any age and is more frequent in men than women. Many people with CIDP benefit with treatment. Although there is a wide spectrum of how severely people with CIDP can be affected, some with the condition require assistance to perform daily tasks. In the more severe cases devices like wheelchairs or walkers may be needed for mobility. One of the goals of early diagnosis and proper treatment is to avoid this level of disability and to improve the long term outlook.

What is Guillain-Barré Syndrome (GBS)?

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.

What is MMN?

MMN (Multifocal Motor Neuropathy) is a rare disorder in which focal areas of multiple motor nerves are attacked by one’s own immune system. Typically, MMN is slowly progressive, resulting in asymmetrical weakness of a patient’s limbs. Patients frequently develop weakness in their hand(s), resulting in dropping of objects or sometimes inability to turn a key in a lock. The weakness associated with MMN can be recognized as fitting a specific nerve territory. There is essentially no numbness, tingling, or pain. Patients with MMN can have other symptoms, including twitching, or small random dimpling of the muscle under the skin which neurologists call fasciculations. The clinical course of MMN is chronically progressive without remission. The prevalence of this very rare disease is estimated to be 0.6 cases in every 100,000 people, which makes it even rarer that GBS, a spontaneously self-limiting disorder in which 1-2/100,000 cases occur each year in North America and Europe. MMN has many features similar to CIDP in that its onset is progressive over time, causing increased disability that reflects the greater number of nerve sites involved. However, unlike CIDP, MMN is asymmetric and affects the right and left side of the body differently. Unlike other forms of chronic nerve inflammation, it is thought to never remit. However appropriate treatment that is FDA approved does limit progression and improves function.

We appreciate your help and support in this endeavor. You can read more about my mom's journey here - https://www.gbs-cidp.org/patient-stories/julies-story/

Thanks,

Emma