Tomorrow my sister Deirdre arrives home the US after attending the first major conference on Rasmussen's Encephalitis. Deirdre and I have both been involved (Deirdre much more than me) in researching and writing background papers for the conference. There has been very little research into the causes and medical cures for RE due (1) the rarity of the disease, and (2) a surgical cure is available through hemispherectomy surgery. The problem is of course, that this surgical cure comes at a significant cost to the child, and it is a very blunt and non-targeted way of dealing with an immunological disease. Also, this surgical cure has not changed much in the last 50 years. We think 21st century medicine should be capable of providing a more sophisticated and less brutal approach to dealing with chronic inflammation in the brain than simply removing or disconnecting the effected half.
At the conference, over 50 of the world's key players in RE and top immunologists, biochemists and geneticists came together to discuss the future course of research that may yield a cure for RE. They all agreed that RE is 'ripe' for research and a key group of doctors will meet again in February to agree a research agenda. Top of the list will be setting up a process for researchers to gain access to brain tissue from RE children. We are very glad that we insisted the Royal Children's Hospital store some of Freya's brain tissue for future research purposes. We will happily donate it to a research brain tissue bank.
Some of the specialists at the conference also felt that specific treatments available for MS sufferers may potentially benefit RE children. Deirdre tells me there was a great deal of excitement and enthusiasm at the conference for the type of research that could be conducted, and some believe that current treatments for other neuro-inflammatory disorders might be applicable for RE children.
Fingers crossed that this conference represents a turning point that will jump start research into understanding and curing RE - hopefully saving future children from this debilitating disease.
Hi Freya!
ReplyDeletemissing you so much and can't wait to see you on Tuesday!
Edie
xx
This is such good news. Let's hope that in the future it will come to be seen as a real turning point. It sounds promising.
ReplyDeleteGood on you both, Deirdre and Carolyn, for playing such a pivotal role. If Frey had to have this wretched disease, she could not have done so in better hands, and a future cure could not be a more powerful legacy.