FEEDBACK ABOUT THE SURVEY IN DESIGN PHASE
From a researcher:
“It’s a great project to make an impact. I hope you are able to find patterns.”
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From people with dystonia:
“Thank you so much for sending me the survey on dystonia. I found it extremely interesting. So much of the information and questions were relevant.”
“I found it extremely helpful so thank you for that.”
“I am very proud of you and the work you are doing. I know it will be of help to many who deal with dystonia.”
“I’m hoping findings from all of these studies will lead to breakthroughs in finding the cause and treatment of dystonia.”
“I think research by the victims of dystonia themselves would be very useful”
“You are very thorough and professional. Everything looks good. I think people would be very interested in participating in this survey. We often feel that we are not heard, especially with a rare, weird, somewhat bizarre disorder like dystonia.”
“It must be sooo frustrating for you, hurdle after hurdle, but the old saying I guess rings true- no pain, no gain. I have full confidence that you will do the best you can.”
FEEDBACK ONCE THE SITE WAS UP
Feedback from patients with dystonia :
“Thank you for all your work. You’ve done a wonderful job.”
“Thanks for the great information. I like the professional style of information”
“This is EXCELLENT! I recommend that everyone check it out. Thanks for posting. Going to try to print it out.”
“Wow. What a fantastic resource. I’m in tears reading some of this. Such a cruel disease. Newly diagnosed, I have not accepted this yet although I know it’s not going away”
“Outstanding job! I commend you for all the work you have done on this project. The response you have already received indicates the interest people have in expressing their thoughts and learning from the cumulative responses of others. I can’t imagine how many hours you put into this project. Words are inadequate for me to tell you how proud I am of you.”
“Good read. “
May I share this link on my personal Facebook page?”
So interesting
Thank you for sharing the information.
I think it will be a great resource for researchers.
Just sat here for two hours going through this information. Thanks for the share.
Thank you for all your work.
Very interesting. I just spent an hour reading the whole history of dystonia. Lots of good webinars came up this year too!
I’ll check that out. My older brother who was diagnosed years before me has always been one to find humor in everything. I’ll have to show it to him as well.
I finally had a moment to check this out. Thank you! This has and will help my daughter a lot.
I urge everyone to participate
What puzzled me are questions regarding dystonia “pain”. There is no pain in musicians dystonia, just involuntary cramping.
I like surveys Thank you so much for this information
I’ve done some of the surveys. You should ask if before or after treatment.
Thank you very much indeed for your brilliant website. I came across it a few weeks ago but hadn’t looked at it again until today. You must have spent a huge amount of time researching and writing it. What a great job! It’s an excellent resource
Thank you ever so much .I will forward ur email 2 members in our group here. Thx 2 u and all involved n making this happen.
Great work on all of this! Appreciate all you do and I would love to hear the results next May! Thanks
Wowwwww. This website is. V e r y. Impressive!! Keep going . U r doing something phenomenal and helpful for the Dystonia world
I have found the questions on the dystonia survey really interesting and thought provoking. It makes me happy that I feel someone is trying to figure this bizarre condition out. Thank you for trying to help those suffering every day with this condition
Thank you so much! I am very intrigued to see the results of the surveys as I learned a lot from just taking the survey myself. Thank you again for all the hard work you put into this
very exciting initiative
I’ve forwarded the information and shared the survey with our members
Thank you. The post generated some interest. I do hope more are taking part in your surveys. Keep up the good work
Latin translation: Note Bene
This is thorough!!! So much great information. I’ve just spent the last 30 minutes absorbing this info. Thanks for posting.
Awesome!
That is wonderful. I will remind everyone about the study. I am looking forward to your findings. Without champions like yourself who take the initiative to get people involved in learning more about this rare movement disorder, we would remain on the sidelines in terms of research and treatments.
Thank you for the website page
“I am going to send out your website to all of our members. I want to highly recommend to the group that they will learn much from your research website and also that their participation in the survey may assist professionals in our future treatment and care.”
“This is really awesome. Very professional.”
“I skimmed through it and it looks very detailed and good.”
“We look forward to hearing updates”
“I will pass along information to members that there is such a survey”
Thank you for the confirmation in my feelings. Your positivity is just what I needed, I will definitely check this site out
Brilliant. Can’t remember if I’ve taken part in any but will definitely have a look and do any that I can.
Wow! That’s awesome!
Fabulous to know that so much research is being conducted these days. I prayed for this the past forty years!! YAY!!
I just did the vocal one. My voice tends to sound like I have laryngitis if I talk too much or am in an active episode. However, I was surprised that when I repeat the word eighty as the quiz asked, I would start losing my voice. Weird stuff!
Interesting. I never knew it could hit other parts of the body.
I just stumbled across your website while searching for info on dystonia. You have an amazing amount of data. Many thanks and what a wonderful resource to you have created. We work on ourselves so we can help others, but we also help others so we can work on ourselves.
Thank you… awesome website … Thank you again for pursuing any and every avenue for history & relief. Love all the helpful comments from patients and your surveys.
Good luck with research I’ve had dystonia for 44 years and have filled in many of your questionnaires
Thank you for sharing this I’m going to try to take this today.
Thanks for sharing this !
You have some absolutely phenomenal data and research there.
patient, Wales
Thanks for sharing
Patient US
Wow thank you so much for this! I never knew about this website
Patient
I’ll make sure to complete. Thank you
patient
I’m very active for dystonia people in France. I listen, help, and réconfort every people who phone or write me. Many people are alone and don’t understand about illness. Thank you very much about your work and your help for us. I would try to send your question for people dystonic. Some question are not traduce in French. I make traduction for a good team to help her. We will try to do the best. Thanks very much to make something to us.
Patient in France
We would love to know the results of the surveys and hope to publish them in our magazine to share with our readers.
American cervical dystonia association
Good luck with research I’ve had dystonia for 44 years and have filled in many of your questionnaires
Thank you for sharing this I’m going to try to take this today.
Thanks for sharing this !
Thank you. I’ll look into this for sure. I hope more awareness and advocacy will come about for people suffering from movement disorders soon. I’m betting on a revolution in medicine too especially with all the medical research bustling because of the pandemic and need for better treatments for all disease
Feedback from researchers, clinicians, research institutes:
This sounds like a formidable project and an outstanding start, wonderful for the dystonia community. We would be interested to take a look at the data when the study closes.
I agree that clinicians and researchers (like myself in particular who do not interact with patients very often) would benefit from a better understanding of the diverse experiences of dystonia patients. The variability in dystonia symptoms, in the muscle affected, severity, treatment effectiveness etc. makes it challenging to study and treat but also interesting from a research perspective. Perhaps with this survey some patterns will emerge.
Please continue this special work.
I am giving a Zoom lecture in a few days on Dystonia and would love to include the results of your survey.
We commend anyone who uses their time, talent and experience to raise awareness about health disorders and to encourage and support others with a health condition.
I commend your efforts on the survey. Indeed I agree that this kind of information can be very informative for patients, caregivers, and researchers alike.
We will circulate. Good news!
Please send me a copy of the results of the survey
Thank you very much for reaching out. The topic of movement disorders is not one of the most common, but it is very important in terms of recognition, diagnosis, and treatment. Thank you for your diligence in this topic.
This sounds like a formidable project and an outstanding start, wonderful for the dystonia community. We would be interested to take a look at the data when the study closes.
Thank you for your email and for the interesting links regarding dystonia that you have provided.
Thank you for your message. Your previous message was shared with the medical school. I will also share today’s updated message with the medical school.
Thank you for your email, please be advised this has been posted on our member’s forum.
Thank you for your email message and for forwarding the information you provided.
I do know of dystonia and the life-changing impact that it can have. I also know of the community of people with this condition and how they support each other and seek to raise awareness of the condition. Yes I would of course be interested in your findings.
“I have forwarded your email to my colleagues who work on programs for people with movement disorders”
We will try to let others know about the survey and hope that this will help the patients with dystonia.
I work in the world of optometry and know that struggle of bringing new information to pcp,s is very difficult. Don’t stop what you’re doing. I think this issue is far bigger and not as rare as they think from what I’m reading. Try to get insurance companies to look at the site and explain the money they’ll save if patients don’t have to jump from one dr to another to find answers. They’ll then educate the doctors on this subject.
I have copied this to two of my staff. As an ophthalmologist/geneticist, I may see cases and will try to remember.
Thanks for your email. I have no doubt that this condition is underrepresented in medical school curriculum and will pass this along to the relevant course director.
Thank you for your note, your interest, and reference to this website. Dystonia is indeed a very important condition for which diagnosis can be delayed and for which only properly tested and valid therapies should be provided. It is an important topic in our curriculum and in postgraduate training.
Thank you for bringing this to my attention. I am going to explore the coverage of dystonia in our curriculum with the relevant course directors to see how this movement disorder is covered and I greatly appreciate the supporting information you sent.
I believe we do cover dystonia in our curricula (for medical students as well as residents in the appropriate fields of medicine). and I am sharing your note with the leadership of our medical student curriculum
Many thanks for your interesting email.. I will forward this to the Dean and the Course Directors who review our teaching.
Thank you for your email. I will share your comments and suggestions with the relevant instructors in our program.
Thank you for your email and useful information We will review all information that is is given.
Thank you for your email and your advocacy. We will be examining our curriculum to assure that dystonia is adequately addressed.
Your website looks fantastic and has some really nice resources- credit to you for running a valuable and comprehensive resource and congratulations on the large responses
Thank you for the detailed and useful information.
I am impressed with the surveys you have been doing and with the elegant summary on the subject you have presented. This must be very helpful to people with dystonia, and also to physicians like myself.
Doctor in Norway
Thank you very much for sharing your research I will be happy to share this with our members.
New Zealand pain advocacy group
We regret that we cannot circulate it to our patient organisations, but have forwarded the information to our scientific director and survey team.
European research group
We would be interested in seeing the aggregated results.
Our survey team was impressed by the very specific questionnaires on medical information and “health related quality of life”.
European rare disease research group
Thank you for this information. I would be happy to share the results of the surveys with the editors for information. It is my understanding that the journal is seeking to publish research from scientific institutions, but I am sure that this will be of interest to them more broadly.
UK medical studies publishing house
Thank you very much for sharing your research with our Society. I will be happy to share this with our members.
Pain organization New Zealand
Thank you so much for providing us with all of this information about dystonia. Ironically I had not been aware of this particular ID until just last week so receiving your info has been very helpful.
Feel free to post a request on our Facebook for people to participate in your surveys.
US organization for those with invisible disabilities
We have reviewed your article and will be putting it pn our website under the Conditions for Dystonia. I will let you know when it is posted.
Pain association, USA
We regret that we cannot circulate it to our patient organisations, but have forwarded the information to our scientific director and survey team.
We would be interested in seeing the aggregated results.
Our survey team was impressed by the very specific questionnaires on medical information and “health related quality of life”.
European rare disease research group
Thank you for this information. I would be happy to share the results of the surveys with the Chief Editors for information. It is my understanding that the journal is seeking to publish research from scientific institutions, but I am sure that this will be of interest to them more broadly.
medical studies publisher
Lived Experience With Dystonia 