CIDP
What is CIDP?
CIDP (chronic inflammatory demyelinating polyneuropathy) is a rare autoimmune condition that affects people differently, causing weakness and numbness in the arms and legs. Autoimmune conditions happen when the immune system mistakenly attacks the body’s own cells and tissues. For some, CIDP continuously worsens over time, while others have symptoms that stabilize and relapse, or some experience a CIDP episode that lasts 1-3 years and does not return.
What type of HCP should I see?
Neurologists are doctors who treat and diagnose conditions in the nervous system, so they are often the first and primary care team members to manage CIDP. Your neurologist will be your main point of care and they will assess your symptoms and monitor your treatment progress or response. You may also see a neuromuscular specialist, a neurologist who specializes in the treatment of diseases affecting the nervous system and muscles like CIDP.
What are the symptoms?
Possible symptoms of CIDP include but are not limited to: tingling or sensory loss in the arms and legs, weakness of arms and legs, loss of balance, difficulty walking, burning pain, difficulty lifting objects, and fatigue. It can be helpful to write down your symptoms and share this information with your doctor.
What is Shining Through CIDP?
Shining Through CIDP is an educational resource, provided by argenx, aimed to help those living with CIDP and their caregivers by providing reliable information, helpful tips, and relatable stories of both trial and triumph.
Can children have CIDP?
Although less common, children can be diagnosed with CIDP. It is important talk to your child's doctor if you have questions.
What are the different types of CIDP?
- Typical CIDP
- Distal CIDP
- Focal CIDP
- Motor CIDP
- Sensory CIDP
Who cares for people with CIDP?
-NP
- Infusion nurses
- Physical and occupational therapist
-Mental health professionals
How do I get diagnosed?
It is important to talk to your doctor, as they can provide medical information specific to your situation. CIDP is often difficult to diagnose, however, there are a variety of steps your doctor may take to understand what is causing your symptoms.
How can I register?
When you sign up, you will get the latest CIDP updates, resources, real stories from people living with CIDP, and much more delivered to your inbox.
How many people have CIDP?
In the United States, an estimated 34,000 patients are currently diagnosed with CIDP
What are the causes?
Although the cause of CIDP is not fully understood, some studies have shown that with CIDP, the body accidentally creates harmful antibodies, known as harmful IgG (immunoglobulin G) antibodies. These antibodies attack the outer covering of nerves, called myelin, and break it down on the neurons in the peripheral nervous system-the part of the nervous system responsible for messages from your brain and spinal cord to your organs, arms, and legs. CIDP symptoms occur because the communication to and from the brain is lost or slowed. In someone without CIDP, IgG antibodies do not attack myelin. Instead, they play a role in protecting the immune system, which in turn, help protect the body from disease.
When should I see a doctor?
You should see a healthcare provider as soon as you or your family member notice potential symptoms like unusual tingling, weakness, or pain in your hands or feet.
What are your treatment options?
Talk to your doctor, as they can provide medical information specific to your situation. It can be helpful to write down your symptoms and share this information with your doctor.
Who is argenx?
argenx is a global immunology company. There is a common purpose across argenx to pursue a better tomorrow in partnership with the rare disease community. argenx is driven to pioneer new approaches to treating autoimmune diseases and fueled by the resilient spirit of patients to urgently deliver them.
Any support organizations?
- GBS-CIDP Foundation International
-Immune Deficiency Foundation
- Autoimmune Association
- Autoimmune Registry
- Others
What is Myelin?
Myelin is essential to the functioning of nerves because it facilitates communication between the brain and all parts of the body. In people with CIDP, myelin becomes damaged, causing electrical signals to weaken or stop. It is unclear why this happens, but it is thought that the body’s immune system perceives myelin as foreign and attacks it, causing damage and leading to loss of function.
Who is affected?
CIDP can affect people of many ages and races and is more common in men between the ages of 40 and 60. CIDP is not known to be genetically inherited or contagious
What is the goal?
A goal for people diagnosed with CIDP is to reduce symptoms and slow disease progression.
Where is argenx located?
argenx’s United States headquarters are located at 33 Arch Street, 32nd Floor, Boston, MA 02110.
Can I stop receiving emails?
I understand and can stop you from receiving any information for this program in the future. Could you please verify the exact information that is on your mailing and/or email address so that I can accurately opt you out of the argenx database?
Does CIDP get worse over time?
The course of CIDP varies among individuals. It is important to talk to your doctor about a treatment plan and treatment goals, as they may be able to provide medical information specific to your situation.
How can I find a specialist?
It is best to speak to your healthcare provider for referrals to specialists. The search for CIDP care team members may take some time, but there are resources to help along the way, like the:
• GBS/CIDP Foundation International
-Website: https://www.gbs-cidp.org/ Facebook: GBS-CIDP Foundation International
Can it be misdiagnosed?
Talk to your doctor, as they can provide medical information specific to your situation. It can be helpful to write down your symptoms and share this information with your doctor
What resources are available to download from your website?
- My CIDP Care team contact card
- Self care worksheet
- Health Insurance
What can I do as a caregiver?
Becoming a caregiver for someone who has an autoimmune disease can be difficult and exhausting. The most important thing you can do for your loved one is to take care of yourself first. Eating well and getting enough sleep may provide the energy you need to help your loved one. Asking for help when it is needed may also prevent caretaker exhaustion.