9. Feedback from patients and researcherse

9. FEEDBACK


The surveys were anonymous and most people who took part did not communicate with the researcher. However since people were informed about the surveys through social media some did post a reaction to them. A few wrote to the researcher directly through email to give feedback . The comments are listed here anonymously. However the reactions also show a general pattern of positive response to the survey project and hope for its ability to help with research.

a. Feedback from patients

Thanks for the great information. I like the professional style of information

This is EXCELLENT! I recommend that everyone check 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.


I think it will be a great resource for researchers

I think research by the victims of dystonia themselves would be very useful

I just sat here for two hours going through this information. Thanks for the share.

Very interesting. I just spent an hour reading the whole history of dystonia.


I like surveys

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. 


So interesting.

 I  know that struggle of bringing new information 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 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 very much indeed for your brilliant website. You must have spent a huge amount of time researching and writing it. What a great job! 

Thanks again for what you’re doing. Your website has been bookmarked for future reference! It’s an excellent resource and I wish you every success with it for the future. Likewise good luck with your search for answers for your own dystonia. If it’s anything like mine it won’t be easy to live with but somehow we find a way.

I checked out your website and I found it fascinating.  What a great idea.  Good for you for creating it!

Wowwwww

This website is. V e r y.  Impressive!! 

Keep going

You are 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!1 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

 I was completely honest and if everyone was, we might learn something.

What I’ve learned from talking to people in my support group, there are people

who don’t really talk to their docs. They seem to somehow be afraid of them.

I encourage them to keep searching…it is possible to be able to tolerate the aggravation with help from your Dr.   The Dr can’t read your mind. Thanks for all you are doing to make this project come alive.

b. feedback from researchers

I have no doubt that this condition is underrepresented in medical school curriculum and will pass this along to the relevant course director.

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.

It is always encouraging to see more and more people involved in enhancing dystonia awareness. Objective, portable, reliable and inexpensive systems to measure dystonia and other movement disorders is sorely needed

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.

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.

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. 

Thank you for your thoughtful advice. 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 .

Thank you for y our email and your advocacy. We will be examining our curriculum to assure that dystonia is adequately addressed.

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. As a

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

c. feedback from foundations, associations and other groups


We will circulate. Good news!

I am going to send out your website to all of our members on the list . 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.

I have forwarded your email to my colleagues who work on programs for people with movement disorders

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. The post generated some interest. I do hope more are taking part in your surveys. Keep up the good work

Thank you for the information on dystonia. We will give a mention in our magazine.

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.