Report Launch: Mental Health and Rare Disease

Following a recent study into Rare Disease and Mental Health, which many of our members took part in, Rare Disease UK are pleased to announced that the findings of the project.  The results have been written up into a report, which was launched in Parliament ahead of Mental Health Awareness Week.

To read more about the study and view the full report click here

July 11th, 2018

Can you help with a survey?

During the past decade, Behçet’s disease (BD) has received focused attention from the biomedical and health sciences; however, the psychological aspects of this disease are still very poorly understood. A team of academic researchers from Liverpool Hope University and Bournemouth University, in collaboration with clinical psychologists from Aintree Hospital in Liverpool, have launched a series of surveys aiming to understand psychological factors of BD.

In a recent paper, published in the Journal of Clinical Rheumatology, they showed that illness perception in BD differs from that of patients with rheumatoid arthritis and cardiovascular disease. For example, people with BD have significantly lower personal control over the illness and treatment, and higher emotional responses, identification with the illness and understanding. Furthermore, patients with BD are more emotionally distressed, which negatively influences emotional adjustment, health-related outcomes and non-adherence to treatment.

The results of this study showed that the way BD patients perceive consequences of BD and identity with the illness mediates the link between symptom activity and pain. Moreover, emotional components of the illness strongly relate to disease activity and energy level.

This study suggests potential directions for clinical psychologists and healthcare practitioners in developing support programmes. For example, targeting perception of the disease identity and perception of the anticipated consequences of BD may reduce sporadic pain-related psychological and physical functions, both alone and as an adjunct to other treatment. Of potential interest for the cognitive behavioural interventions may be specific emotions underlying emotional representations about BD such as embarrassment, guilt and sadness.

People who live with BD need support from partners, family members and friends. At this time, we have a limited understanding of the role of close social support in alleviating the impact of negative emotional appraisal in BD patients. Research linking the effects of social support, negative emotional appraisal and life satisfaction will help to facilitate programmes for patients to enable them to do the things that are important to them, as well as for their families and their close support network to develop the skills necessary to provide support for people with BD.

Addressing psychological aspects of BD will help to manage complex patients effectively. If you would like to help with this research, please complete the survey available at: https://lhubos.onlinesurveys.ac.uk/the-relationship-between-affects-and-perceived-heath-statu

July 2nd, 2018

Insights into how the body clock and time of day influence immune responses!

I thought our marvellous Behçet’s community would appreciate sight of the following research, all helping to add to the ‘body of knowledge’. Some of the full article confuses me, so don’t let that put you off if you find the same! Certainly, I think it has particular relevance regarding consideration as to the timing of medication, and recording what is ‘going on’ and when; as the summary below mentions.
Article Summary.
Insights into how the body clock and time of day influence immune responses are revealed today in a study published in leading international journal Nature Communications. Understanding the effect of the interplay between 24-hour day-night cycles and the immune system may help inform drug-targeting strategies to alleviate autoimmune disease.
[The full article available at nature.com/articles/s41467-…] 
Circadian rhythms or 24-hour rhythms are generated by the body clock, allowing us to anticipate and respond to the 24-hour cycle of our planet. Maintaining a good body clock is generally believed to lead to good health for humans, and disrupting the circadian rhythm (for example, working night shifts) has been associated with immune diseases such as multiple sclerosis; however, the underlying molecular links have been unclear.
In the new study, Professor Kingston Mills and Dr Caroline Sutton of Trinity College Dublin, and Dr Annie Curtis of RCSI (Royal College of Surgeons Ireland), and colleagues show that immune responses and regulation of autoimmunity are affected by the time of the day when the immune response is activated.
Using mice as a model organism, they show that a master circadian gene, BMAL1, is responsible for sensing and acting on time-of-the-day cues to suppress inflammation. Loss of BMAL1, or induction of autoimmunity at midday instead of midnight, causes more severe experimental autoimmune encephalomyelitis, which is essentially an analogue of multiple sclerosis in mice.
Professor of Experimental Immunology at Trinity, Kingston Mills, said: “In the year that the Nobel Prize in Medicine was awarded for discoveries on the molecular mechanisms controlling the circadian rhythm, our exciting findings suggest that our immune system is programmed to respond better to infection and insults encountered at different times in the 24-hour clock. This has significant implications for the treatment of immune-mediated diseases and suggests there may be important differences in time of day response to drugs used to treat autoimmune diseases such as multiple sclerosis.”
Although further investigations are needed to understand how to precisely modulate circadian rhythm or time-of-the-day cues for beneficial immunity, the findings in this article serve well to remind us the importance of ‘keeping the time’ when dealing with the immune system.
Research Lecturer in the Department of Molecular and Cellular Therapeutics at RCSI, Dr Annie Curtis, said: “Our study also shows how disruption of our body clocks, which is quite common now given our 24/7 lifestyle and erratic eating and sleeping patterns, may have an impact on autoimmune conditions.”
“We are really beginning to uncover exactly how important our body clocks are for health and wellbeing.”
sciencenewsline.com/news/20…
Tony
Chair
Behçet’s Syndrome Society

January 22nd, 2018

How do you get work when your cancer won’t go away?

An introduction to Mindfulness by Jon Kabat Zinn

Many people with Behcet’s are finding that Mindfulness is helping them to cope with physical and mental symptoms  on a daily basis and it is helps with general wellbeing.  See the link to an Introduction to Mindfulness by Jon Kabat Zinn and if you find it interesting and would like to know more, you can watch more of his videos on You Tube.

An introduction to Mindfulness by Jon Kabat Zinn

 

December 13th, 2017

How the NHS England works

This new animation from @TheKingsFund shows how the NHS in England works. Watch it here 

October 25th, 2017

Bio-Behcet’s Research Trial

Click on the poster and contact details below:

August 25th, 2017