Tuesday, May 29, 2012

Keep Calm





"Keep Calm and Carry On" has come along way since 1939 when the Ministry of Information launched posters as a way of boosting moral after the outbreak of the war.  The original Keep Calm poster, the last of three, was never released and seen by the public; it remained unseen until nearly 60 years after the end of the war.  The first poster was discovered at a bookshop in Alnwick - Barter Books- which, if you have never been, should definitely be on your "to visit" list - and has now reached iconic status worldwide.  However, and I will be so bold to admit, I think that it has been bastardised too widely and too often, but on this occasion I will put aside my prejudices and share my "Keep Calm" poster, only to then be rather pedantic...

SMA is the disease that my daughter has.  SMA is a neuromuscular disease that kills more children than any other genetic disease.  1 in 4o of us unknowingly carry the gene; this gene is passed from parents to their children, but SMA can only affect a child if both parents carry a defective gene.  Call me pedantic but we can not "cure" our genes, they are who we are, they determine the colour of our eyes and hair, whether we can roll our tongue or not, whether or not we will be a carrier of SMA or be affected by the disease.  We can, hopefully - one day - however, treat SMA, especially as Scottish research shows that that it is possible to reverse the muscle damage seen in SMA.  So we can look towards gene therapy and medication, and may well be able to improve life expectancy and partially relief the symptoms of SMA, but we cannot cure SMA. 

A treatment for SMA may become a reality, this might not be within Eilidh's lifetime,  but I am hopeful for others affected by this neuromuscular condition.  On Thursday I am attending  a Research Evening with the Muscular Dystrophy Campaign and hope to find out more about the advances in research which will hopefully change lives of children and adults in the future.








3 comments:

BavarianSojourn said...

You know, this is one version of "that" poster that I really think is worth the wall space... That book shop sounds fantastic too! Hope you are well! Emma :) x

h0peful mummy said...

thank you, emma. i just wish there was a cure and not just potential to treat. the book shop is amazing - i would definitely go there for a day without children - and take it alnwick castle too...

BavarianSojourn said...

Me too. Hope Thursday goes OK...