Tema: Congenital insensitivity to pain - CIP - RareConnect Discussion Groups

Tema: Congenital insensitivity to pain - CIP - RareConnect Discussion Groups



RARECONNECT

Families affected by congenital insensitivity to pain are looking to connect & learn from each other on RareConnect

HSAN 4 - anyone else affected?

My son has been diagnosed with HSAN 4 - hereditary sensory autonomic neuropathy at age 17 months.

This is feeling no pain and unable to control body temperature (body doesn't sweat)

Main problems we have had with my son was recurrent temperatures, self harming ( biting his tongue, fingers) which resulting in dental extractions.

He also has some developmental delay for example walking, speech etc

He also suffers from reflux - and has dry skin, iron deficiency and ?asthma

I would love to hear from other families