Since today is National Rare Disease Day, I’m going to discuss CIDP (Chronic Inflammatory Demyelinating Polynueropathy). So…what is CIDP anyway? CIDP is a rare autoimmune disease in which the immune system attacks the myelin sheath of the peripheral nervous system (all nerves excpet the brain and spinal cord). The myelin sheath is the outside insulation of the nerves, and when it is destroyed the signals transmitting from the brain to the muscles are interrupted. This results in pain and paralysis for the patient. The cause of the disease is still unknown, however some patients report the onset of the disease following a gastrointestinal virus or trauma. For me personally, I was in a car accident preceeding the onset of my CIDP and I truly believe that is what triggered the disease for me. It effects fewer than 1 in 100,000 people. It can strike both genders at any age. There are many treatments available for CIDP, but currently no cure.
CIDP has an interesting onset. Typically the patient develops tingling in their hands and feet first, similar to that annoying sensation that occurs when your foot falls asleep. This tingling can become very intense and painful though. Next the patient will exhibit signs of weakness, the weakness begins in the hands and feet and then moves inward towards the core of the body. This weakness becomes paralysis if left untreated, or if treatment doesn’t work. Symptoms and the severity of the disease can vary drastically between patients. They typically include; loss of balance, drop foot, difficulty walking and going up stairs, weakness, brain fog, tremors, fatigue, and muscle spasms. Symptoms can progress until a patient becomes fully paralyzed, but typically doesn’t with treatment. With a successful treatment regimen, symptoms will reverse and the patient will heal from the core of the body outward towards the hands and feet.
CIDP can occur in 2 different forms. A slowly progressive form, or a remitting relapsing form. Patients with the slowly progressive form of CIDP will become weaker over the course of years. Patients with the relapsing form will experience periods of the exacerbation of symptoms and periods of remission with very few, if any, symptoms during the remission phase. Though residual symptoms may persist after treatment and are caused from permanent nerve damage.
Though CIDP is incurable, thankfully there are many viable treatment options. Treatment options include oral immunosuppressants, IVIG, plasma pheresis, SCIG, and oral or IV steroids. Most patients take a combination of these treatments to manage symptoms of the disease. In very severe cases of CIDP that don’t respond to these treatments, chemotherapy is used to suppress the immune system until it stops attacking the body.
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CIDP is a devastating and lfe altering diagnosis. It’s a very challenging disease to live your life around, especially because of the uncertainty it inserts into your life. I never know when I’m going to have a flare up and go paralyzed, or if a flare up is going to cause my nerves enough damage to leave me with permanent paralysis. It’s a tough one for sure! Life with CIDP will continue (What other choice does one really have?), it’s all about finding a different way. A different way to live your life, a different perspective on life, and different expectations for your life.
Finding a Different Way 