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Could I borrow a little bit of your time to talk about an important matter ?
Today is an awareness day for Horton’s neuralgia. This severe medical condition also carries a harmful name: cluster headache. Using the word ‘headache’ is part of the problem - it creates situations where people misunderstand or downplay the severity of this potentially lethal condition. Horton can be an evil invisible secret - it causes frightening pain attacks that happen for an example during night and many of us hear comments like “but you don’t look like you are sick at all”.
Having Horton’s neuralgia may lead to losing your job, studying, hobbies, income, spouse and family - all that matters in life. If these unbearable pain attacks are not in control, some patients end up taking their own lives in deep desperation. Suicide rates have been reported to be as much as 20x the average. All these suicides are preventable. We do not need to allow this condition to destroy the lives of the patients.
Patient communities formed by Horton patients worldwide have partially replaced the healthcare system. This condition that does not yet have a treatment developed to treat it has self-treatments born in patient communities that save lives every day. Patients guide each other because there are no care paths or guidelines for care established that work well. In desperate life or death situations the peer support from other patients is crucial since we don’t have official support and acknowledgement for psychiatric burden that comes with this disease. When patients still suffering from Horton’s neuralgia find other patients they start surviving.
Horton is not migraine. Horton is not a headache. Horton is an incurable brain disorder that needs attention and development of official care guidelines - these people need help.
We need a new name for new conceptions.
Thank you for taking time to read this. We are very grateful if you can pass this forward.
Tony Taipale
Finnish Horton Association
End the agony of cluster headaches
#hortonsneuralgia #clusterheadache #hortonassociation #CHAD2021 #artecluster
Horton related art: https://www.facebook.com/claudio.geraci.7
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