CDKL5 Deficiency Disorder: What are some of the biggest challenges you face as a caregiver?

Hello everyone,

How are you doing today? 😊

Caring for a child with CDKL5 deficiency disorder can indeed present its own unique set of challenges. In our dedication to meet their needs, we sometimes might overlook our own well-being, both physically and emotionally. It’s a delicate balancing act that requires compassion and resilience.

@jtuumalone @StaceyTice @Anarain8gmail.com @GeraldineC @Ciera20 @BeckyJones @SapnaPatel @Paulaconnolly @IrishSimon @Sarahskillicorn @LDarroch @shelleyashton @HeleneBirgitteStubberud @annakala @Torswalt @AJF1981 @Abbygale @VeeraDd @DeepaS

What are some of the most significant challenges you face in terms of managing daily care, navigating healthcare systems, balancing personal life, and coping with emotional stress? How do these challenges impact your overall well-being and how do you address them?

Don’t hesitate to share your questions/thoughts/advice with us here!

Take care, 

Somya from the Carenity team 🌼