It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
Alongside daily experiencing the debilitating symptoms of the condition, such as muscle pain, intense fatigue and cognitive impairments, those who suffer with ME also have to fight even to have it recognised. Here are four of the most common issues in the diagnosis, and treatment, of this life altering condition.
The leading causes of death have changed markedly over the years. A century ago, infections were the leading causes of death. Today, we will probably survive much longer than our ancestors but it is more likely we will die of age related diseases like mobility problems, arthritis and Alzheimer's or other chronic diseases like heart disease, cancer or stroke.
Like most people, when I go to vote next may, the first thing I'll have in mind will probably not be the cure for dementia that could help my mother in 20 years' time, or the cure for autism that might help my child in years to come, or even the treatment for cancer that could save my life in 50 years' time.
The awareness-raising we and many others have been doing this week is truly crucial in the fight against HIV: because the stigma that surrounds the infection, and that at least one of our celebrity ambassadors has noticed on social media in this last week, drives a reluctance to test which actively promotes the continued spread of HIV.
Progress is urgently needed in understanding Alzheimer's disease and in finding effective treatments. Available drugs can help stabilise memory loss and confusion for a few months in about half of patients, but no preventative treatments exist and none that slow the inexorable development of the disease.
Countries like the EU, Israel and India have already banned the use of animals in cosmetic testing because animals don't predict the human response. We know this. We know that animals do not provide biologically meaningful human substitutes- and yet we continue to sustain these methods in medical research with our funds and faith.
It is estimated that more than 60,000 people will die from this dreadful disease over the next 30 years unless new treatments are discovered. Yet research into meso - the only thing that is likely to find those treatments - is shamefully underfunded, receiving a fraction of the investment received by diseases that kill similar number of people, such as skin cancer.