You're right - this is a great idea - so much is done on YouTube now, and with some very good results. I know not everyone will be willing to be placed on YouTube, but I'm sure enough will that it will be a great beginning.

I HATE the idea of being filmed - I am probably not a great representative for a documentary - but I'd do it. (You sure you wouldn't rather just have my voice? Or my statement - and get Roseanne or Rosie to read it? LOL)

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Lois,

We'd love to see you on film ... I'm sure you look amazing and are very funny. I think your story is very interesting considering that you lived for so long without knowing that you had MC. I think a lot of people can relate to that even if they went through that for even just a portion of the time.

We could also post the videos on You-Tube and require a password for viewing. That would give us the ability to control who saw the video (i.e. people on this site, friends, family, doctors and researchers).

It could almost serve as propaganda for us to teach the medical community what having this disease is really like--minus the medical theory that has accumulated and distorted the medical profession's understanding of MC.

If we put the video on the You-Tube with limited access, via password, for people to get on I would be willing to record myself walking, trying to run and showing the actual physical symptoms of MC.

If you do it and I do it Lois, we would probably only need three or four more people and we would have enough for a small peice.

Type of Myotonia: Thompsen's

Country: US

Jim -
In all frankness, I feel I am not the best representative, because as soon as people (including professionals) see an obese woman, they immediately presume most of her problems would go away if she just got her act together and lost weight. So I'd feel like I needed to defend myself against this prejudice right off the bat.

However, I am willing to embarrass myself personally for the general greater good. I do think some of us have really interesting stories, and good insights, and I like your idea very much. So count me in. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

I understand how you feel Lois. Society has many prejudices against weight that it fails to recognize. Just like MC, people make all sorts of assumptions how we can just make our weight (or other issues) go away based upon an adjustment in our behaviours. The truth is that their are also sorts of coping mechanisms that people with MC develop to deal with the societal judgements and lack of understanding that seem to accompany our condition. I'm not sure what your personal reasons are for your weight gain, and I don't think you should reveal anything that you are not comfortable revealing about yourself--I know I'm not going to--but what I do know is that doctors need to know that there are consequences to misdiagnosing this disease that can result in lasting emotional and mental scars that take years to get over.

Type of Myotonia: Thompsen's

Country: US

I think you would be an excellent representative. You don't have to show yourself.

I was thinking of doing a flash animation video myself, and narrating over it.

Type of Myotonia: Becker

Thanks Jan and Jenna. I agree that not only seeing others with this condition will further in the healing process, but being able to send a short documentary to doctors will give us a united voice in the medical community. The reason for telling stories is that stories connect with people on an emotional level and allow people to relate to others directly. We want to first connect to the medical community on an emotional level, because if we try to connect to them on their scientific level first they are not going to be as open to us as, quite frankly, many people with a high degree of training/education (i.e., doctors, researchers) think they are the experts and there is little patients can teach them that they don't already know.

In regards to the videos, no one will have to say their names and the videos will be posted on You-Tube in a password protected area. The only people who will be given the password are those who either visit this site or contact me directly. If someone doesn't want the password posted on this site, then people will have to contact me directly.

I will be sending out invitations to different doctors and neurology groups, who upon emailing me back will get the password. There is still the chance of the videos getting out on the internet, but this first time around there will be as many precautions taken as possible to avoid that.

Type of Myotonia: Thomsen's

Country: US

Jim,

I think your project is a great idea. The more the patients get involved in education and advocacy the more it will drive research.

Some of us grew up with this and seemed to be okay with it even though it was humiliating and embarrassing. But by far the majority of people I hear from have been devastated emotionally by the impact of MC on their lives. They often tell me that they cry when they read the stories and no longer feel alone. I think seeing videos would be even more effective and personal in bringing home the symptoms and challenges to family members, friends and doctors.

Thanks for persisting in getting the information out!

Jan

Type of Myotonia: Thomsen's MC

Country: US

Jim - I am in North Atlanta andd might be able to assist in some way. Let me know i I can. jeff bridges at gmail dott comm

Type of Myotonia: Beckers

Country: Atlanta - US

It might be an idea to have a template of questions for people to answer in a conversational manner. Some people might have particular problems that don't affect others, or some may be more severe. It might also stop me from rambling!

Lois, whilst I can appreciate your reservation I think that portraying this condition as impacting on as many different types of people as possible would far outweigh your concern. A bit of clever editting could certainly emphasise this and deflect some of the criticism that you've rightly identified.

Type of Myotonia: Becker's

Country: England

Pete, I agree completely. I went out and bought a camera last weekend, so hopefully I can get some filming done this weekend. Here are some questions that I sent to another person who is filming interviews:

1. Your approximate age
2. What state/country you live in
3. Current profession or previous profession(s)
4. Other personal details you are comfortable sharing such as number of children (if any), basic outlook on life, feelings about having this disability
(this is not as important, but can provide simple filler to help the audience connect with you personally).
5. Any medicines you are on for Myotonia
6. History of diagnosis of Myotonia and any problems misdiagnosis has caused in your life
7. How the disease feels in terms of stiffness, pain and energy levels
8. How does the disease affect your life--does it limit anything that you do and has it made you stronger in any way.
9. Do you think the medical community can improve the way they deal with people with Myotonia Congenita?

Once you answer these, then I will review and ask you to shoot what they call B-Roll in the film world. It's basically just moments that show what you are talking about.

Type of Myotonia: Thomsen's

Country: US