CDKL5 Life Expectancy

Would it surprise you to know that "CDKL5 life expectancy" is the most commonly searched term related to this disorder according to Google Analytics? Imagine getting a CDKL5 deficiency disorder (CDD) diagnosis for your child and immediately wondering if it means your child won't live. Many families do.

What is the life expectancy for someone with CDD?

We recognize the desire to understand the trajectory of this disease; however, the reality is that the life expectancy for individuals with CDD is currently unknown. This is primarily because the disorder was only identified in the early 2000s, and long-term data on a large population of affected individuals is not yet available.

It is important to note that CDKL5 deficiency disorder is not considered a terminal illness in childhood. Many individuals with CDD live into adulthood, with cases of people living into their 30s, 40s, and 50s. As more individuals are diagnosed and live longer, and with ongoing research and participation in patient registries, a clearer understanding of the long-term prognosis will emerge.

Is CDKL5 deficiency disorder potentially life-limiting?

CDD is a developmental and epileptic encephalopathy and, as such, it impacts many bodily systems. Unfortunately, sometimes people lose their lives to secondary complications that stem from living with CDD. Things like:

• Sepsis
• Severe respiratory infections or difficulties related to lung function
• Gastrointestinal emergencies such as intussusception
• Severe, untreated scoliosis
• SUDEP (Sudden Unexpected Death in Epilepsy), although uncommon in CDKL5 it cannot be ruled out for anyone with intractable epilepsy

Even the highest level of care provided to someone with CDD may not be able to prevent an early death. Sometimes it simply cannot be prevented. So, let this be a reminder to us all to make each day with our loved ones count.

We live but for a moment.

Until next time 💚

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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.