Dear Dr Hilary,
Regarding the article in Fabulous magazine dated 23rd March 2008-03-25
On behalf of the membership of the Behçet’s Syndrome Society we feel compelled to write to you regarding your article in Fabulous magazine dated 23rd March 2008.The actress Rosie Marcel described her symptoms and diagnosis of Behçet’s Disease in the article and you gave your comments.
Behçet’s Disease has been around a long time, but was first designated a syndrome by Hulusi Behçet in Turkey in 1924. It is prevalent in Turkey, Greece, Japan and China and was once called the Silk Road Disease. It is quite clearly ‘a rare disease with common symptoms’ and that is the problem. GP’s spend many months seeing patients with Behçets who suffer with ever more debilitating symptoms sometimes becoming confined to bed and unable to move without great pain and suffering without identifying the possibility of Behçets Disease. Many are labelled as having Munchausen’s and suffer depression during this period of non-diagnosis. There are also various aspects of the disease affecting brain, digestive tract, eyes and joints all this in addition to the recurrent ulcers that are common amongst patients. It is a lifelong disease with remission and flares in various degrees throughout a patient’s life time with each flare causing often irreparable damage.It can be eased by various and variable drug regimes prescribed by specialist Behçets Consultants, but as you quite rightly point out, it is incurable at present.
To offer advice along the lines of “put on a brave face and carry on living a normal life” is both patronising and glib in the extreme and has greatly upset many of our members, professional and lay, including Rosie Marcel herself. Many of our members have suffered a life-time of misdiagnosis and incorrect treatment, suffering great pain and discomfort whilst waiting in vain for a correct diagnosis. Being told to “put on a brave face and carry on” is not at all helpful and indeed from a psychological point of view is very harmful as we are sure with retrospect you would agree. What you failed to portray is how difficult it is to aspire to a ‘normal life’ whilst living with Behçets. A large proportion of our members have visual impairment due to the illness whilst others have serious mobility issues due to both neuro Behçets causing strokes and inflammation of the joints. Many of our members are physically incapable of leading a normal life relying on carers to get through the day and comments like yours will exacerbate their difficulties in obtaining DLA.
We could provide you with several case studies as evidence that for many, putting on a brave face and living a normal life is just far beyond the realms of reality and these are far more common than you would expect. Examples include a lady in Chichester in her 40’s who has admitted herself into a care home so as not to burden her husband and 2 young sons as she is paralysed from the neck down and can no longer speak due to Behçets; or the 13 year old girl in Newcastle who needs to travel to London every 3 weeks to see a specialist and needs to be fed through a tube in her stomach due to the ulceration of her mouth and throat; or the Midlands based Sikh gentleman who was disowned from his community due to the appearance of genital ulcers which were misconstrued as being part of a sexually transmitted disease; or the father of a young Behçets sufferer whose daughter was taken into care due to the appearance of genital ulcers which Social Services and the medical professionals thought were caused through sexual abuse; or finally the young man from the Midlands who died from neuro Behçets and septicaemia caused through wounds not healing, leaving behind a 3 year old son and wife.
We are fully aware your column is a celebrity on the couch article, but we had hoped to be treated with more respect by a medical professional. You appear not to have researched our website or made yourself familiar with the latest treatment; the Behçets Forum a group of eminent consultant specialists would have been delighted to give you guidance in this respect and perhaps advised against the ‘pull yourself together’ school of medical support.
We appear to have no opportunity to redress this situation in your journal which will cause our members further anguish. We would like to invite you to meet with our membership to learn more about Behçets and to give them an opportunity to explain to you the hurt and distress you have caused through your comments. We have such a meeting on the 11th of October 2008 in London and you would be very welcome.
We look forward to receiving your comments in due course and will be posting this letter and any reply on our website.
Jan Mather
Chair of the Behçets Syndrome Society on behalf of the Trustees.
