We have launched a Facebook Group for younger adults living with dystonia. The group is for adults aged over 18 only, and an upper age guide is 40.

If you would like to join the group please read the group rules below and then complete the form at the bottom of this page. Asking to join the group through this form means you accept the group rules. We will not accept any requests from people who have not completed the form.

Group Rules

Please note membership of this group is restricted to those who are over 18 only.

Membership of this group is for younger people who have any form of dystonia or their carers only. Membership of this Dystonia Society Facebook Group is also conditional upon compliance with the Group Rules. If you do not follow these rules you may be removed from the group.

This page provides a place to discuss Dystonia, share experiences and find support. The group is specifically for the discussion of dystonia (particularly in relation to younger adults) and related topics. The following guidelines are designed to help provide a quality environment for members of the page. Please take a minute to read them and keep them in mind whenever you participate.

While we are excited to hear from everyone, it is important to note that postings by members to this Dystonia Society Facebook page do not necessarily reflect the opinions of the society, nor does the society confirm their accuracy.


Three simple rules

1. Do not be directive

It is fine to talk about your experiences and treatments but do not assume what has or hasn’t worked for you will be the same for everyone else.

For example:

  • It is OK to say “I recently tried XXX and it made no difference whatsoever to me” or “I recently tried XXX and it was brilliant for me”.
  • It is not OK to say “I tried out XXX and it doesn’t work” or “XXX always works”.

It is OK to make suggestions or share a view but do not be directive.

For example:

  • It is OK to say “I have found XXX really useful” or “I have not found XXX very helpful”.
  • It is not OK to say “You should try XXX” or “Don’t try XXX”.


2. Do not name hospitals, clinics and treatment centres or professionals and therapists

It is OK to talk in general about the places and people you have come across but please refrain from naming them – we cannot allow you to recommend (or condemn!) people or places on this page.

For example:

  • It is OK to say “Just been to see my XXX therapist and I feel so much better – they really seem to understand how my Dystonia affects me”
  • It is not OK to say “My XXX therapist (Joe Bloggs) really seems to manage to help with the pain”

Please do not name and shame. It is OK to talk about your experiences (good and bad) but do not name places or people when you are doing this.

For example:

  • It is OK to say “Just been to see my consultant and they just ignored everything I had to say – so frustrating!”
  • It is not OK to say “Just spoke to my consultant Mr XXX at YYY and he was rubbish at listening to me as usual!”


3. Do not publicly solicit friend requests

This group aims to be a safe place for people to discuss their condition and members should not feel under pressure to accept friend requests. Members are requested not to make repeated friend requests and anyone who feels this is happening to them can refer the issue to the moderators. Friend requests must not be solicited publicly in the group and such requests will be removed by a moderator. Personal contact details must not be posted publicly in the group and such posts will be removed by a moderator.


Posting guidelines

We welcome all questions and commentary, including constructive feedback. We do, however, expect that participants post content and commentary that is both relevant and respectful to this community as a whole. We understand that at times you may feel frustrated but please consider carefully what you post – facebook is not a private conversation and for important reasons different rules apply. We don’t take decisions on moderating posts lightly. The Dystonia Society reserves the right to remove any posts that don’t adhere to our guidelines and to block anyone who violates them repeatedly. Here are some guidelines to bear in mind when posting:

  • By using or accessing this page, you agree to comply with Facebook’s Terms and Conditions.
  • Before posting, please ask yourself if you are keeping to the rules of this page.
  • Posting people's personal information on the page is prohibited (this includes all personal identifiers such as name, place of work etc).
  • Freedom of speech does not include freedom to be abusive with language or make personal attacks on other people.
    • Specifically you must not make slanderous or libellous comments about any individuals, healthcare professionals, companies or treatment centres. Any such comments will be deleted by a moderator.
  • Any posts not relating to dystonia will be deleted (and if necessary marked as spam).
  • Even though often well intended, please do not suggest products by brand name or make product recommendations (including services such as complimentary therapists). Such posts will be removed by a moderator.
  • Sharing links to articles relating to dystonia, in particular dystonia relating to younger adults is encouraged; however please do not share links to specific products (including treatment centres / complimentary therapists etc) – these will be removed by a moderator.
  • Any inappropriate language (sexist, racist, swearing including missing letters / **’s) or just mean spirited etc posting will be deleted.
  • Group members will be encouraged to keep conversation to the board and not to add members of the group as friends or solicit contact outside of group.
    • This group aims to be a safe place for younger adults affected by dystonia to discuss their condition. Discussions should be kept to the group
    • Friend requests should not be solicited publicly in the group and such requests will be removed by a moderator.
    • Members are requested not to make repeated friend requests and anyone who feels this is happening to them can refer the issue to the moderators.
    • Members of the group must not post their own private contact details.
    • The Dystonia Society Younger Adults Group is reserved for giving and receiving support relating to dystonia. It is not meant for general socialisation or unrelated chatter.
  • If you want to contact the moderators because of a concern with content on the group you should email [email protected] .


If members do post outside of the group rules the following will happen

  • The post will be deleted.
  • The moderators may issue a reminder of group rules by post/message/email to the individual responsible. Where possible we will notify the person in a private way: by email if we have one; or by private message as an alternative; and only by posting if all else fails.
  • If the same or similar “offence” is repeated the moderators will issue a warning by post/email/facebook message indicating that repeatedly flouting the rules may result in removal from the group.
  • A further incident will result in a referral to the CEO and possible removal from the group.
  • Any further incidents will result in the individual being permanently removed from the group.
  • If you are unhappy with any action we take in respect of your posts you can ask to discuss the action with the CEO and ultimately use the Society’s complaints procedure to make a formal complaint if you do not receive a satisfactory response.



Any information (other than posts to the facebook page) provided will be treated as confidential and not shared with anyone other than employees of The Dystonia Society. The only exception to this policy of maintaining confidentiality is when there is an indication of a threat of significant harm to self or others or a potential criminal act. In this case the police will be informed on ‘999’ immediately and the helpline (020 7793 3650) at the first opportunity. If there is any doubt at all, the police will be called.



  • Messages posted on this Facebook Group only express the views of the author and do not necessarily reflect the views, policy or advice of the Dystonia Society.
  • Any information posted is done at the contributor’s risk. The Dystonia Society can take no responsibility for the way in which any data might be used by others.
  • The Dystonia Society provides the information on this group as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
  • The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from this group. If you have any health care questions, please consult the relevant medical practitioner.

Once you have read and accepted the above rules please complete this form. We will then send you a link to the page and accept your request to join.