The diagnosis of any ailment can be difficult for not only the patient but their caregivers as well. For those who suffer from chronic inflammatory demyelinating polyneuropathy, or CIDP, it’s no different. However, having a better understanding of the illness can benefit both the person living with the disease and their loved ones by helping them cope with what they have to deal with on a daily basis.
What is CIDP?
Chronic inflammatory demyelinating polyneuropathy, also known as CIDP, is a rare disease that causes sensory loss and severely impacts mobility. A CIDP diagnosis can come as a shock initially, but it’s important to have a full concept of what to expect from living with this ailment. CIDP occurs when an autoimmune response causes the body to attack myelin, the protective covering of the peripheral nerves. Nerve damage ensues followed by symptoms including weakness in the limbs and a loss of sensation and reflexes that could ultimately result in paralysis.
CIDP is an extremely rare disorder that is diagnosed in only five to seven people out of 100,000. It’s often confused with Guillain-Barre syndrome because of the similarity in symptoms. While both are autoimmune diseases that impact myelin, CIDP symptoms can take longer to develop and present themselves compared to those of Guillain-Barre. In fact, CIDP is only diagnosed if the symptoms present themselves for eight weeks or longer.
Treating CIDP
Since CIDP is an autoimmune disease, prescribed treatments often work to suppress the immune response that is causing the attack of myelin. This includes corticosteroids to suppress the immune system, as well as intravenous immune globulin. IVIG is intended to infuse antibodies into the blood. Doctors may also recommend plasmapheresis to remove harmful antibodies. Physical therapy is also suggested in certain cases to help improve mobility. This will help to build physical strength, balance, and coordination to provide an improved quality of life.
Typical CIDP comes with limitations, such as transport. In some circumstances, patients have turned to car auctions to find buyers for their vehicles that they can no longer use. Buyers can find great vehicles at wholesale prices by participating in an online auction. Money made from the better bid in a live auction can be put toward IVIG treatment and other care for CIDP. A high bidder can provide opportunities that may not be fully covered by health insurance. For example, immunotherapy drugs can be used to interrupt the immune system to help stop it from attacking the myelin. There’s also the possibility of stem cell transplant, effectively resetting the body and its responses to various diseases.
Tips for Patients and Caregivers
Dealing with the symptoms of CIDP and the side effects of certain treatments can be overwhelming for the patient and their caretakers, but it’s important to have a support system in place to embrace each day with the illness. Asking for and accepting help can be difficult; however, a healthy physical and emotional environment is needed for CIDP patients to thrive. A CIDP patient needs to be able to take care of themselves, becoming fluent in the ailment by consulting with a healthcare provider and doing further research to make sure that they are getting appropriate care. Self-care is what fuels proper treatment, as simple as eating well and getting enough sleep.
It’s important for a patient to have outlets to vent their feelings after their diagnoses. You can contact a local CIDP chapter to have an understanding of what to anticipate as both patient and caregiver. Specialists can provide some insight into the pain and paralysis that may be associated with CIDP. Open wavelengths of communication, talking, and listening from the onset can be a game-changer when making sure that those dealing with this disorder are in the best place possible.