Dystonia Europe

Meet Julia Kühne, who lives in Rostock, northern Germany. She shares her experiences working within a patient organization for individuals with Dystonia. Julia finds it a unique and fulfilling experience as it connects her with others who understand her condition. Raising awareness about Dystonia, sharing the latest knowledge, and fostering a supportive community are particularly important to her. Additionally, her role offers insights into the functioning of patient organizations and networking opportunities with patients and scientists across Europe. In her free time, Julia enjoys outdoor activities such as walking and traveling, despite the challenges posed by her visibly evident Dystonia. Living near the sea, she finds solace in walking along the shore. When she prefers to stay indoors, she engages in drawing and painting, a passion since childhood that allows her to express emotions and momentarily forget her condition. On challenging days, Julia draws motivation from her friends, who, despite not having Dystonia, provide empathetic support and listen to her concerns. She also practices mindfulness, finding yoga and meditation essential for self-compassion, calming her mind, and embracing herself as she is. We are always looking for volunteers. Please fill out the linked form if you are interested in getting involved 🧡❤️ INTEREST FORM | https://lnkd.in/g2-gCdVi #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

One example of task-specific focal dystonia is musician's dystonia. Pianists' first symptoms typically develop on the right hand affecting the fingers. String players that requires intensive movement of the left hand will experience symptoms on that side. Guitarists and percussionists can develop dystonia in either hand. Woodwind players whose ability requires both hands, face and mouth are affected in those specific areas. The brass players who requires a lot of muscle to produce sound are affected at the corners of the mouth or jaw. Pain is not usually associated with musicians dystonia. Treatment typically includes Botulinum Toxin and/or Oral Medication. Botulinum Toxin - Botulinum toxic injections are known to be most effective in the treatment of focal dystonia. Botulinum toxin injection remain the first line therapy. Botulinum toxin Type A and B have been approved for treatment of dystonia. Botulinum toxin injections temporarily weaken muscles to decrease the contractions and usually need to be injected every 3 to 4 months. Oral Medication - The most commonly used medications include: anticholinergics (e.g. Artane -trihexyphenidyl),benzodiazepines, baclofen, muscle relaxants. Medications often are given on a trial-and-error basis, to balance between the benefits and potential side effects (dry mouth, drowsiness, anxiety and difficulty urinating). You can join in raising awareness, simply by liking, commenting and sharing the Dystonia Europe's posts. As an orphan disease we need all the help we can get. Let's do this!!! 💪❤️🧡 #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

Deep brain stimulation (DBS) is a surgical procedure in which two thin, insulated electrodes are inserted into the brain. These electrodes are then connected by a wire under the skin to a battery usually implanted in the chest or in the abdomen. The battery operates similarly to a pacemaker delivering targeted electrical pulses that block the signals that cause the symptoms of dystonia. The battery is implanted below the skin on the chest wall (or sometimes the lower abdominal wall) so it is barely visible but an outline of its shape and of the wires connecting it to the brain may be visible. The carefully controlled, minute electrical currents delivered through the electrodes on both sides of the brain can have a beneficial effect on the involuntary muscle contractions caused by dystonia. As a result, the symptoms of dystonia such as abnormal movements and postures and/or dystonic tremor can be eased. In addition, DBS can reduce the pain caused by dystonia. The electrodes are usually implanted into an area known as the Globus Pallidus Interna (GPi). Stimulation of this area is known as pallidal stimulation. Deep brain stimulation works most effectively for people who have an inherited (genetic) form of dystonia or for those where the dystonia has no identified cause (this is called idiopathic). The treatment is provided for those with inherited or idiopathic dystonia who have a severe generalised dystonia, neck (cervical) dystonia or dystonic tremor when other treatment options (such as botulinum toxin injections and oral medications) have failed to provide adequate relief. A rigorous patient assessment, selection and deselection process is carried out prior to the operation. In addition to the type of dystonia, a number of other factors are taken into account – for instance DBS may not be suitable where there is also a diagnosis of severe depression because of the risk that DBS may make the depression worse. For more information about the DBS surgery, visit the @dystoniauk website for more information about the DBS surgery https://buff.ly/2EJbohM 💪 Join the cause! Like, share, comment, and subscribe. Every little action helps raise awareness!!!

We are looking for volunteers to join our cause! If you'd like to get involved please fill out the linked interest form. INTEREST FORM | https://lnkd.in/g2-gCdVi #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

Comment with an emoji if you can relate! 💪 Join the cause! Like, share, comment, and subscribe. Every little action helps raise awareness!!! #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

Welcome to Dystonia Awareness Month 2024! 🌟 The Dystonia Europe board is thrilled to kick off a transformative journey celebrating the theme #VolunteerForDystonia. This month isn't just a campaign—it's an exploration of life with dystonia, filled with raw stories, powerful insights, and practical coping tools. Expect to be moved by inspiring stories, feel connected through shared moments, and be empowered by meaningful conversations. We invite you to engage with us: dive into the comments, slide into our DMs, and let your voice make a difference. Your feedback is our guiding light, helping us build an even more inclusive and impactful community. Here's to a month of enlightenment, unity, and inspiration. Let's shine a bright light on dystonia, together! ✨ Happy Dystonia Awareness Month! 🤚 Join the cause! Like, share, comment, and subscribe. Every little action helps raise awareness!!! And for those of you interested in getting involved on a deeper level, please fill out the linked form 🧡❤️ INTEREST FORM | https://lnkd.in/g2-gCdVi #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

'Counting down to for Dystonia Awareness Month 2024! Let's raise awareness and support those affected 🙌 Like, comment and share if you found this post helpful. You can help us spread awareness about dystonia with these simple actions! #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

Join us in spreading awareness for Dystonia Awareness Month 2024! Let's educate, support, and advocate together. #dam24 #dystoniaawarenessmonth2024 #volunteerfordystonia #dystonialife #dystoniaawareness #dystoniafighter #fightfordystonia #dystoniaawarenessmonth #dystonia #dystoniaeurope #cervicaldystonia #generalizeddystonia #blepharospasm #braindisporder #movementdisorder

Tonight we had our first board meeting after the summer break. Everybody joined except President Edwige Ponseel who is still on summer vacation. Great to see everybody and talk about the upcoming activities such as Dystonia Awareness Month, Dystonia Day 2024 on-line event and also some new activities. We are excited to be back working for dystonia patients across Europe and beyond. Thanks to all our followers for your support with sharing our information and activities. It is only by working together that we can make a change for people living with dystonia.

SAVE THE DATE! For the online Dystonia Day 2024 on 21 September from 10 AM - 13.30 PM. Program will include dystonia experts and patients and will be available within the next few days.