CIDP

50 To Forward

This year, we are strengthening our advocacy efforts and putting out a call for a leader in each of the 50 states! These 50 leaders will help us push our goals FORWARD!

Here is what we expect from our advocacy leaders:

  • Be informed about all of our advocacy priorities, especially our policy priority of creating a home infusion benefit for CIDP and MMN patients using Medicare.
  • Be comfortable speaking to others about the community and the Foundation, including the ability to comfortably speak to staff of Congressional offices.
  • Be ready to help others living with GBS, CIDP, and variants such as MMN!

We hope that our 50 to Forward volunteers will help us hold a RECORD NUMBER of meetings during our Month of Action this fall! The Foundation staff will help the volunteers schedule and prepare for the meetings, then it will be up to YOU to lead the meetings and represent the Foundation. Please check back this May (GBS|CIDP Awareness Month) to submit your application. Once you submit, Foundation staff will reach out to you for an interview!

In the meantime, hear from some of our current advocacy leaders about their experience doing advocacy for the Foundation and the community.

Hey doc, are you sure this is CIDP?

By Jeffrey A. Allen MD,
University of Minnesota

It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have other explanations been explored? Should I get a second opinion? It can be hard to diagnosis CIDP. Just as some patients have symptoms for far too long before a diagnosis is made, many others get falsely labeled or misdiagnosed as CIDP. It turns out that over half of all people that carry a diagnosis of CIDP do not have that condition. Some have other explanations for their neuropathy, some have no neuropathy at all – but the sheer frequency of CIDP misdiagnosis is alarming. It’s a hard diagnosis to make in part because there is no single test that can diagnosis CIDP. A clinician arrives at the diagnosis by putting together many different pieces of information, none of which is diagnostic by itself but in the right context and in the right combination can add up to CIDP. The methods used to put these pieces together can be quite variable

amongst physicians. Some clinicians are more experienced and some are not – and as a result the diagnosis of CIDP is not always accurate. There are ways we can do better. Ask your doctor about CIDP diagnostic guidelines. Guidelines are the roadmap to diagnosis. They spell out what symptoms fit with CIDP, what we need to see on the nerve conduction studies, and how other data can influence the diagnosis. They can be helpful to integrate all the information together in a way that gives each piece of data the weight it deserves. Your doctor might say that guidelines are for research. Not true. Modern guidelines such as those published by the European Federation of Neurologic Society and Peripheral Nerve Society (EFNS/PNS) are meant for use in daily clinical practice and can be an invaluable resource to help improve the accuracy of the diagnosis. Although CIDP can affect different people in different ways, there are certain features that are distinctly unusual for the disease. It’s important to discuss these “red flags” with your doctor as they may suggest a completely different diagnosis. Some “red flags” include:

Is it CIDP? These “red flags” might suggest something else.

Symptoms

  • Prominent pain
  • Symptoms all in the feet or legs
  • Symptoms different on one side of your body than the other
  • Prominent light headedness, dizziness, passing out, bowel or bladder changes
  • Prominent fatigue without other CIDP hallmarks

Nerve conduction studies

Absence of clear evidence of demyelination. Ask your doctor to review the guidelines to see if benchmarks for demyelination are met.

Other features

  • Family history of neuropathy
  • Treated with steroids or IVIG and did not have a clear and unquestionable positive response
  • Is there a better explanation for the neuropathy, such as diabetes, toxin exposure, vitamin deficiency, or something else

Many patient’s find that getting a second opinion to be a worthwhile endeavor. We encourage all patients to be evaluated by a CIDP expert at least once. If you have any of the “red flag” features a second opinion is especially valuable. See our list CIDP centers of excellence. Doctors at these centers have a special interest in the diagnosis and management of CIDP, and may be able to help work through some of the diagnostic challenges. Most patients with CIDP have marked improvement of their function with treatments such as IVIG and corticosteroids. If you are not having clear improvement in your condition it would be appropriate to have your condition reevaluated at a GBS|CIDP Foundation International Center of Excellence or other specialized center. The pathway to getting a diagnosis of CIDP can be frustrating. The symptoms. The tests. The uncertainty. It all adds up – and when that diagnosis is reached it can be hard to go back and ask: Hey doc, are you sure this is CIDP? But it’s ok to ask. Whether you’ve had the diagnosis for a day or a decade, you should ask. We all want to get this right.

A Clinical Study of Rozanolixizumab in Patients with CIDP

Clinical research studies are scientific evaluations in people, led by researchers and physicians. They can help advance the understanding of a disease and are the most important way for researchers to find out if potential new treatments are safe and effective. Studies like these are needed to be able to make new treatments available to patients.

Learn more about a Clinical Study of Rozanolixizumab in Patients with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP).

CIDP Disease Burden — Results of a US Nationwide Patient Survey

In 2017, a nationwide survey of US CIDP patients was conducted to assess the impact of disease-related disability and treatment on lifestyle and work activities. Approximately 3250 individuals aged ≥18 years, recruited by the GBS|CIDP Foundation and self-reported to have CIDP, were invited to complete an online survey; of these, 475 completed the survey and their responses were used  to assess disease and treatment burden.

Read more about this surveyCIDP Disease Burden — Results of a US Nationwide Patient Survey