HHE Syndrome – Rare Connect

Hello 🙂

If you have landed on this page, you are probably looking for information on an Epilepsy Condition called HHE Sydnrome.

HHE Syndrome – otherwise known as Hemiconvulsion Hemiplegia Epilepsy Syndrome, is a rare epilepsy condition found in children.

There is not a great deal out there, and when we discovered our son had this condition we set up a Patient Connect page through Rare Connect Eurodis, to help others, like us, connect and find out more to help our kids live their lives to the fullest.

 

To read more about this condition and patient stories, please visit Rare Connect HHE

Hemiconvulsion-hemiplegia-epilepsy Syndrome (HHE) is a neurological disorder, which presents itself as a febrile illness at the onset. Fevers and convulsions are only reduced/stopped via medications. The patient is left with a resulting hemiplegia from the affected hemisphere. MRI and EEG tests show a resulting acute atrophy of one hemisphere of the brain – of which will depend on the severity of the hemiplegia.*

*as was this case for our family

There is no cure at the moment for this severe refractory epilepsy.  There is only management of the condition itself which requires a high dose of anti-epilepsy medications which present a whole host of side affects – cognitive interruption – fine and gross motor skills impairment, memory issues which affects learning abilities, you get my drift.

There is also brain surgery – a radical brain procedure that disconnects the 2 hemispheres.   We are about to go down this path with our son…. watch this space.

We aren’t the first family to encounter this, and we certainly won’t be the last!

I believe there is a brighter future for our kids that live with this condition and by sharing our stories, is a crucial step in spreading awareness and hope for these little champs.