Sunday, October 21, 2012

Don't Crow About a Cure for Cerebral Palsy

Cerebral palsy is incurable! That is the stark reality for anyone who has a child diagnosed at birth – along with the knowledge that their lives will be inexorably affected by whatever caused the disorder.
Although around one in ten babies born with cerebral palsy (CP) will be affected by some sort of birth injury, it is now considered that other causes, mainly some instance of damage to the brain while the baby is developing in the womb, are the most common reasons for CP in infants.
When you are learning about what the disorder will mean for you and your child, many things will be talked about – therapies, surgeries, medication – but, unfortunately, no cure. And although it is good to know that advancements in these specifics, as well as equipment, education and even attitudes to disabled people are occurring all the time, cerebral palsy is still firmly on the incurable list.
So, it was with some trepidation that I read about a new treatment, being pioneered in the US, claiming to have found a cure.
The study, published in the Science Translational Medicine journal, tells of experiments which helped cerebral-palsied rabbits to regain "almost... normal mobility levels" by the use of nanomedicine (the medical application of nanotechnology – matter on a molecular scale).
If you are affected by an illness or injury the reporting of these so-called cures and miracle studies can be really dangerous. You have to steal yourself into not pinning too much hope on them, but when you read a headline like "Special brain treatment may help the 750,000 US children and adults suffering from cerebral palsy", you can't help but take a small intake of breath and hope with all your heart.
Like countless other trials and studies before it, for all manner of drugs and procedures, this new study has been carried out by a promising-sounding group of medics from some of the US's top study and healthcare centres.
It involves injecting a drug, used for its anti-inflammatory properties, into rabbits' brains via microscopic molecules called dendrimers to specifically target the damaged areas of brain tissue.
The authors say they have proved that rabbits suffering cerebral palsy-like symptoms which received the treatment within six hours of being born underwent dramatic improvements in motor-function.
Apparently, rabbits were used for the research because their brains are closest to humans in that their development takes place partially in the womb and carries on after birth. So, the authors say, there is now an indication that humans may have a "window in time" straight after birth where the damage in the brain can be identified and targeted with a nano-device.
In the various articles I sought out regarding this new technique it was quite clearly stated in all of them that the medics and researchers know they are still some way off being able to provide humans with a treatment for cerebral palsy – so, why do writers of such medical articles feel the need to headline their pieces with such misleading language.
As a reader, and party with an interest in cerebral palsy, all I really want to know is that research is being done, and for their efforts I am thankful to the authors of this study. However, what I do not want is false hope. And for a writer to blithely suggest that this breakthrough "brain treatment" may help those already suffering from cerebral palsy is an inaccuracy of the cruellest order.
Yes, the study has promise. Yes, the authors have proven efficacy in their fields. But, no amount of nanomedicine is going to help those who are living with cerebral palsy now, or those babies, and their families, who will be born with CP in the near future. For these people, the reality is intrathecal baclofen therapy, diazepam, botulinum toxin and selective dorsal rhizotomy – and the seeking of brain injury compensation to help pay for such treatments – because there is no cure for cerebral palsy in the here and now, and these are the realities that CP sufferers and their families face.
So, my request to medical journalists and writers out there is please, please, please be more speculative with your headlines. Don't shout about running when the authors of the research you are reporting upon have not yet said they can walk. Please do not grab at phrases such as "almost... normal mobility" and plant them in the first sentences on a report which suggests that there is a cure on the horizon for a disorder which has thus far been deemed incurable.
Cerebral Palsy is a cruel disorder which wreaks havoc on lives and robs families of "almost... normal" lives. Headlines and news stories purporting miracles really do not help.

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