HHE Syndrome – Rare Connect
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 connect and find out more to help our kids live their lives to the fullest.
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.
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.
Hopefully, one day there will be a medication that can help our kids without terrible side affects, until then, we research and share findings to help with this cause.