Why are you shaking?

This is an innocent question that I was asked by a three year old this afternoon. My answer was, I wish I knew!

During a long stay in hospital recently, I was diagnosed with FND. When I was first given this diagnosis, I found it very hard to understand, let alone accept. FND was presented to me as a non-organic disorder, meaning that there is no physical damage or chemical imbalance causing the symptoms. I was referred to the psychologists, who were convinced that there must have been a psychological element causing / driving my symptoms. This did not make any sense to me, especially as I am a molecular biologist by training. How could some of my asthma attacks, which resulted me in being blue lighted into crash, not be actual asthma attacks, but my brain copying the symptoms of one? How could the fact that I tremor all day long be the result of my brain not functioning properly, and yet not be caused by a chemical imbalance? What about my foot, which has been pulled in at right angles to my leg by malfunctioning muscles, rendering me unable to walk?

As a scientist, I appreciate the complicated nature of the brain. Even more crucially, I understand that we really do not understand the cell biology, biochemistry and physiology behind most if not all neurological disorders. For example, recent research demonstrates that the central nervous system can be targeted by the immune system, resulting in the creation of antibodies against our own cells, tissues and organs. The best understood example of this is MS. There is also growing evidence that the immune system may be causing disorders previously described as psychotic, such as schizophrenia. Another disorder, Chronic Regional Pain Syndrome, was originally thought to be psychogenic but there is growing evidence that it is now caused by an autoimmune reaction to neurons. Whatever the cause of FND symptoms, it is hard to believe that they are not caused by malfunctioning of the brain at the biochemical level in some way.

Funding for medical research is difficult to secure at the best of times. Pharmaceutical companies are only really interested if they can see the possibility of a profit at the end of it. Charity funding tends to be best supported for well known diseases that affect a large number of the general population. Finding funding for research into a little known disorder such as FND must be extremely difficult, especially when there is currently not even a UK charity to promote the disorder in the first place. But why is this so, when 1 in 4 neurology patients end up with a diagnosis of FND? Why, when it is clearly an illness that so dramatically affects people’s lives? Why is this a diagnosis  never  heard of, even within the medical community? Why are patients with this diagnosis either not believed or treated incredibly badly (both physically and emotionally) by medical professionals who do not understand FND? These are questions that are hard to face up to, but there is a very real need to find the answers to them, and to address the needs behind them.

Small support groups, such as BristolFND, are an opportunity to start addressing some of these questions. By even having a support group, we are bringing people’s attention to a diagnosis that is often very hard to talk about. By meeting up with other people with a similar diagnosis, we are breaking down barriers, reducing isolation and creating our own supportive community. My FND symptoms are very obvious; other people’s symptoms can be invisible but just as debilitating. Given the spectrum-like nature that FND symptoms have, it is quite likely that most people know someone affected by this disorder, even if they are unaware of the fact. Please share these ideas, so that we can grow this community within Bristol and surrounding areas.


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