Rare Disease Day: “My life is different, unique, but full of possibilities.”
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There is no genetic engineering in the plant
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World Rare Disease Day is intended to raise awareness of rare diseases. Although they are considered rare, there are many people affected. The #wieDu campaign is also intended to create awareness of symptoms and causes.
Since 2008, on the rarest day in the calendar, February 29th, hundreds of thousands of people around the world have come together to draw attention to the “orphans of medicine” on World Rare Disease Day. Those affected like Wiebke, 27, and Dimitra, 24, don’t just go public with their diagnoses on this day. You have long been campaigning for greater understanding and awareness in society of the special situation and more support for people with rare diseases.
It is important to them, on the one hand, to protect others from their fate of very long uncertainty about their symptoms, and on the other hand, to be perceived as whole people and not reduced to their illness. Based on this motif, the #wieDu campaign was created in the context of the “Loudrare online Festival”, which will once again bring together several hundred affected people and companions on February 24th and 25th this year. Wiebke is one of the founding members of the digital community “Loudrare”, which is behind the annual festival and the #wieDu campaign.
Rare means that there are still many people affected
Even when people talk about rare diseases, more people are affected by them than is often assumed. “In Germany alone there are three to four million,” explains Wiebke, who has been living with lupus since she was twelve. “An estimated 30,000 to 40,000 people suffer from B. systemic lupus erythematosus, the most common form of my rare disease. When I received the diagnosis, I felt like I had to give up on my dreams for life. But that wasn’t the case. My life is different, unique, but full of possibilities, and I would like to convey that to other people affected.”
Information about lupus
In Germany, an estimated 30,000 to 40,000 people suffer from systemic lupus erythematosus, the most common form of this rare disease – nine out of ten are female and tend to be young when they receive their diagnosis.
The website www.LupusCheck.de offers a comprehensive range of information and services for interested parties, those affected and relatives, who can also follow it on a Facebook and Instagram channel of the same name. Experts share their knowledge, patients like Wiebke report on their experiences, for example in the form of encouraging stories. The free digital lupus day for patients takes place every year, and anonymous participation is also possible. The podcast “LupUS – Strong Together” has also recently been launched. As a daily companion, the free LupusLog app helps you document symptoms individually and keep an eye on your own lupus using a digital diary.
Helping others by sharing one’s own experience and encouraging them is also Dimitra’s motivation to get involved in the #wieDu awareness campaign and in the media: “With the hashtag #wieDu we will become more visible and signal together that every person affected by a rare disease is unique, but equally full of wishes, hopes and needs, like everyone else. We want to show everyday life, break down prejudices and create awareness.” One of the biggest problems with rare diseases is that there is little information and experience about them and it often takes a very long time until the correct diagnosis is made and the corresponding specific treatment is given. This also applies to various forms of autoimmune diseases, such as Wiebke’s lupus or EGPA (eosinophilic granulomatosis with polyangiitis), from which Dimitra suffers.
The common problem of rares: finding causes and information
Dimitra is taking part in the “Loudrare online Festival” for the first time. She was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) at the age of 13, like 1,000 to 1,500 other, mostly slightly older people in Germany every year. In EGPA, small and medium-sized blood vessels become inflamed due to a dysfunction of the immune system. This can result in damage to organs. The lungs, heart, digestive tract or nose are often affected.
Even more often than with lupus, those affected by EGPA, which, like lupus, is a rheumatological autoimmune disease, usually have to endure a long period of suffering before the correct cause for their symptoms is found. When the immune system attacks your own body, it can happen in very different places or organs of the body. In EGPA, for example, asthma initially occurs very often and can only be distinguished from “normal” asthma through targeted differential diagnostics. Until further symptoms appear in other organs due to the underlying EGPA, “only” asthma is often treated for a long time.
Information about EGPA
In Germany, around 1,000 to 1,500 people are diagnosed with EGPA (eosinophilic granulomatosis with polyangiitis) for the first time every year. Men and women are affected about equally often. It is usually diagnosed late in life.
The “Living with EGPA” portal aims to educate, accompany and support those affected, their families and the people around them. The website offers a wide range of information about the disease and therapy as well as help for everyday life in order to live actively and well supported with EGPA There, Dimitra talks about how her everyday life is influenced by the illness and how she deals with it. The offer includes a Facebook and Instagram channel of the same name.
An early diagnosis is extremely important
According to a similar principle, the diagnosis of lupus can also be delayed. Valuable time often passes before the various doctors to whom those affected seek advice find the common denominator of the underlying rare autoimmune disease. If left untreated or not adequately cared for, the gradual damage to the organs in both EGPA and lupus progresses irreversibly. Therefore, the earliest possible diagnosis and treatment that is tailored to the individual form of the disease and life situation is extremely important for long-term quality of life. Like most autoimmune diseases, lupus and EGPA cannot be cured, but can be easily treated with targeted, modern therapies.
An important help in everyday life with a rare disease is to be able to find out more about it and to exchange ideas with other people affected. Digital offerings and platforms in particular can close a big gap here. In addition to regular consultation with the treating doctor, they can impart knowledge about the disease, help with the personal preparation of examination appointments, provide information about possible social benefits, provide insights into the experiences of other affected people and provide tips and tricks for your own lifestyle.
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