Urticariaday2016: Never give up!
The motto of this year's urticaria day on October 1st is “never give up”! Approximately 1 million people in Germany suffer from a chronic urticaria. Women twice as often as men. The urticaria day supports all patients in managing their disease in order to increase their quality of life. Studies conducted over the last few years on the quality of life restriction of patients suffering from urticaria have confirmed that the disease has its negative impacts on many areas of life. It is important to not only pay attention to the classic symptoms, such as skin changes and itch, but also to the negative consequences for urticaria patients and their families. There is no doubt that patients with chronic urticaria suffer extremely from their health complaints. Especially unpredictable flare ups of the disease along with the itch do not only burden the body, but also the soul. On the one hand patients suffer from a cosmetic impairment due to wheals and angioedema, on the other hand they suffer from psychological stress due to itch, insomnia, loss of concentration, absence at work and the feeling of loss of control over their own life.
Although urticaria is a disease which - with few exceptions - disappears at some point in life, it is a great challenge to stay strong and to never give up! In many patient cases it takes months or even years in order to figure out the triggers or to find an effective treatment. The urticaria day aims to encourage urticaria patients during this hard time to never give up and to get their lives under control again with the help of other patients and doctors.
The website www.urticariaday.com offers people suffering from urticaria a portal where they can encourage others and find support. The website was initiated for this special day. Patients can use it to write down how they managed to not give up, despite all challenges and share experiences with others. They can upload their urticaria activity score results together with experience reports. The urticaria activity score (UAS) is a score, which shows the current severeness of ther disease. It is calculated by using the “number of wheals” and the “intensity of itch”, which are documented in an urticaria calendar over a period of one week. The aim of every treatment is to keep the UAS as low as possible, 0 is the optimum score. The calendar is available on the urticariaday website.
The bigger the community - the better
Furthermore, urticariaday is a great opportunity to raise awareness for urticaria among patients and their families, doctors, politicians, the press and the world. We want to increase available educational opportunities for other doctors, thus they can provide better care to urticaria patient. In uniting the urticaria community, you will extend your network, see that you are not alone and be able to reach out for help when needed.
Who are “we”? “We” are all of us! Patients, doctors, organizations, you and me. Each individual who participates in urticariaday2016 is part of the urticaria network. Help us help you get your urticaria under control by telling others about urticariaday. Share information about urticariaday on 1. October 2016 in any way you can – twitter, facebook, by liking this page, by taking and sharing the UCT.
Inspire others and create your own event! Why not throw an urticaria party or start a local self-help group? Perhaps you can even encourage your doctor to offer urticaria training at their clinic for other doctors. Every contribution counts. Together with us, you can help to make the urticariday successful worldwide.
Urticariaday2016 was initiated by Unev, the Urticaria Network e.V. and daab e.V. and is proudly sponsored by GA²LEN and many other organizations throughout the world that strive to improve conditions and treatment for patients with allergies and urticaria.
The diagnosis and treatment of urticaria is a big challenge for patients and doctors, since the disease has a great variety of triggers and reasons. The cause of the disease can be identified for max. 70% of the patients after a complex series of tests. Even if doctors succeed in identifying the cause, a curative therapy is only possible for some patients, e.g. with an antibiotic treatment. All remaining cases require a symptomatic therapy. Although there are effective and well tolerated treatment methods by now, many patients still receive insufficient therapies or therapies with a lot of side effects as for example a long-term treatment with cortisone.
In order to focus more on patients who suffer from urticaria and to raise awareness for the disease and the best possible treatment, the urtikaria network – UNEV and DAAB – Deutscher Allergie- und Asthmabund (German Allergy and Asthma Association) initiate the third urticariaday worldwide on 1st October 2016.
There will be worldwide events for doctors and patients on the topic urticaria. Patients who suffer from urticaria, self-help groups, health-care professionals and everyone, who wants to participate can get information on the website www.urticariaday.org.
You can receive further information (such as interviews with experts or people affected, more detailed texts or advice for everyday life) from our press offices:
- Deutscher Allergie- und Asthmabund e.V. – DAAB (German Allergy and Asthma Association)
Sonja Lämmel Enable JavaScript to view protected content. - Urtikaria Netzwerk (Urticaria Network) – UNEV
Prof. Dr. med Markus Magerl, Enable JavaScript to view protected content.
The DAAB was founded in 1897 and is located in Mönchengladbach. It is the largest and oldest patient organization in the field of allergies, asthma and neurodermitis. There are currently 18,000 members. The main tasks include the care for people suffering from allergy or asthma, consumer protection from dubious allergology offers, press and public relations, lobbying and liaison between different occupational groups in the field of allergology (networking). The DAAB is an independent non-profit organization.
The Urtikaria Network is a platform where patients and doctors can meet each other in order to fight urticaria together. On the website www.urtikaria.net, people suffering from urticaria or those who are interested in the disease can learn valuable facts about the clinical picture, hear the latest news and get in touch with other people affected or with “urticaria” doctors.
