Hi there,

My name is Moira and I have a 3 year old little girl with an exceptionally rare disorder, which falls into the HSAN (Hereditary Sensory Autonomic Neuropathies) sector and she is suspected to be one of only 30 people in the world with her particular type of HSAN. It prevents her from feeling most types of pain so she does not know or care when she injures herself, which has led to many horrific issues so far.

However: I am here because for as long as I can remember she has always screamed like she is being tortured if touched by ANY form of heat or cold and - despite numerous questioning sessions from her neurologist (and others in her medical team) - I have yet to find any explanation or reason for this. She is currently showing symptoms of erythromelalgia and while researching this, found that in children it is usually found secondary to other nerve disorders (unsurprising, given her HSAN) ... but also secondary to "small fiber peripheral neuropathy." A term I have never come across before now, in all my researching of her problems.

The initial search brought up the mentioning of symptoms such as the main ones being "heat and cold sensitivity" with other symptoms as found in many other neuropathies. However; this first "article" was from wikipedia with no sources cited and I cannot seem to find any medical article specically mentioning this so far. Most mention SMPF generally and talk about the "burning pain" which she probably does feel, but more as an "itching" sensation - which she has also always felt - but (as is usual for anything related to my daughter) most of the "pain" symptoms are irrelevant to her, as she does not feel those types of pain. They may mention heat and cold, but more in an "insensitivity" criteria in that some people become numb to both like other types of HSAN, which my daughter does not have. She reacts severely to any form of temperature!

Sorry, that was a bit long to get to my question! I basically want to know - from those of you actually suffering from SMPF - is this something widely found? Do some of you feel huge sensitivity to heat and cold (as in it being extremely painful) as well as those who find they are numb to both?

Thanks for any information x