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International Myotonic Dystrophy Organization

International Myotonic Dystrophy Organization

Sections

• General Information
• Activities that Children Like
• Anesthesia Cautions
• Behavioral Issues
• Books Pamphlets fact sheets
• Breathing Problems
• Bowel and Gastric problems
• Canada
• Cardiac Issues
• Cataracts
• Cold Weather
• Congenital Muscular Dystrophy
• Dental Needs
• Diabetes
• Heart
• Disability Benefits
• Doctors and DM
• Bring this to Doctor appt
• Donations
• Education
• Encopresis
• Estate Planning
• Fatigue and Sleepiness
• Feeding Problems
• Financial Issues
• Genetic Information
• Guidelines and Care Plan
• History of IMDO
• How common is DM
• How do I know if I have DM
• Job Accomodations
• Juvenile DM
• Legal Information
• Links to other pages
• Long Term Outlook
• Lung Problems
• Management of DM
• MDA Clinic USA
• Medical Information
• Mental Retardation
• Myotonic Dystrophy Booklet
• Netherlands Summary Info
• 11th International Conference
• NIH workshop 2005
• Otitis Media (Ear Infections)
• Personal Stories
• Personality Changes
• Products that can Help
• Research Library
• Results of Preimplant Genetics
• Roig Study
• Skin Problem
• Social Information
• Sleeping Problems and Energy Levels
• Student Projects
• Swallowing disorders
• Summary of Condition from Netherlands Task Force
• Swiss MDA
• NHR Sweden
• Toilet Training
• Timeline
• Treatments management
• Workshop on Burden of Muscle Diseases

These pages are devoted to information about Myotonic Dystrophy (DM1 and DM2) and Congenital Myotonic Dystrophy (CMD), both  forms of muscular dystrophy. These are also know as dystrophia myotonica or Steinert's disease.  There are two types of Myotonic Dystrophy DM1 and a new second type called DM2 or PROMM for Proximal Myotonic Myopathy.

 The information in this page will be medically based whenever possible and will attempt to be as accurate as possible. This page will try and assist parents and families as they struggle through this disease. As there is not a comprehensive place to find and receive practical everyday information  on Myotonic Dystrophy this page will serve that function. Don't miss the personal Stories section this contains great personal information of over 50 people and families with Congenital Myotonic Dystrophy.  If you have Myotonic dystrophy you should carry the Alert Card that folds into wallet size. Also the research library has both summaries and full text articles.  See the new Ways to Manage DM  page over 10 types of potential disease management  have been tried by investigators. Also if you are a medical professional click here to go to the most recent information on Myotonic Dystrophy. (This is a more technical site  with a lot of medical terminology) Just added is a new section of the cellular basis of muscular dystrophy also a new student section. Very important not to miss reading the Cardiac Problems section, many people with Myotonic Dystrophy need to know this information!!. New information on Social Security Disability payments.   Another important section Feeding, digestion, and swallowing issues. .    Here are two new studies on Social Support and Breathing Problems. There is a support group Support Groups now active in the USA in the Los Angles Area

Order Books from IMDO

A New Book Myotonic Dystrophy "The Facts" by Dr. Peter Harper was published in summer 2002. This is a wonderful book that contains essential Information about Myotonic Dystrophy. Order your copy today. Please inquire for international shipping which will be extra. Also if you are in England The Myotonic Dystrophy Support Group in England is selling the book for 10 English Pounds. Member price is discounted by $2.00. Please consider joining the our IMDO for an Extra $20 dollars.  Allows 7-10 days for shipping in the USA and Canada. You can also mail a check or money order drawn in the United States Bank to the address below.

Non -Member Price $21.00 (Includes shipping in USA and Canada)

Member Price Including New Membership  $44.00 (Thanks!) (Includes Shipping in USA and Canada)

Membership

 The International Myotonic Dystrophy Organization (IMDO) publishes a newsletter on a monthly basis. This is done electronically and you may subscribe by  sending us an email. click here.  You can also join IMDO by paying the $25 year family membership fee. Click this button below for a quick way to join us for $25 US.  We need your support. Please sign up and help us with a $25 donation. This is good for one year for the entire family!!!

New and Hot Information

  We have three new brochures you can download and print here.
General Information about Myotonic Dystrophy
Heart problems in Myotonic Dystrophy
Cataract in Myotonic Dystrophy

  Here it is  hot off the press the Alert card for members with Myotonic Dystrophy to carry with them!! It alerts medical and official personnel about the disease and some of its manifestations. this card has been available in England for a few years and has helped its members immensely. If you would like a card send us an email with your snail mail information.  each family member should have a card. Let us know how many to send to you. Fill out the form in mailing list  Click here!

USA National Registry The National Institute of Health has appointed the University of Rochester , Rochester, NY USA as the National Registry for Myotonic Dystrophy. This registry is going to track all people in the USA who register and also will select for research studies out of these registrants. If you want the latest and greatest info and ability to get into some studies click here for their website. For a pamphlet and more info click here

Request for Lens Samples The early appearance of cataracts is an important feature of Myotonic Dystrophy and is often the only obvious symptom in those only mildly affected. This suggests that the lens of the eye is particularly sensitive to Myotonic Dystrophy making it an important target for research.  Click here for more info contact: j.rhodes@uea.ac.uk

STUDY CONFIRMS TREATMENT POTENTIAL
A study in Quebec confirms the potential for treatment of Myotonic dystrophy. The researcher there used gene therapy to introduce into cells, that had Myotonic dystrophy, materials that seemed to reverse the progression of the disease Click here for more information. Click here to read the study

Chat Room
This is the place that you can ask and answer questions about Myotonic dystrophy, the congenital Form and congenital muscular dystrophy. The chat room is formally active at 8 PM Central Standard time on Tuesdays Click here to enter

Netherlands Study Recommends Pre-Implant Diagnosis to reduce Disease complications. A recent study December 2004 published in the Netherlands recommends the use of Pre-Implant Diagnosis for couples that want to have children to reduce the incidence of the disease
Click here for more information

 Discussion Forums
This is the place that you can ask and answer questions about Myotonic dystrophy, the congenital Form and congenital muscular dystrophy. You can read posts and post a question yourself that others will answer.  Over 500 posts on the site Click here to enter

Contact Information

You can contact us at the following locations. E-mail is the fastest way....Please fill out the feedback form so that we can make this website even better.  The Myotonic Dystrophy Organization gladly accepts donations to support the education of the medical profession consumers and to further the cause of research. Donation Page

Site Limitations Make sure to Read this:

This page is intended for educational purposes only, to provide an overview of Myotonic Dystrophy for patients, their families, and health care providers. It is not  intended to recommend any specific treatment, nor should  it be used as a guide for self-treatment. Patients with  Myotonic Dystrophy should consult their physician before making any changes to their treatment regimen. The IMDO is a non profit corporation whose purpose is to publish information about medical information available in the public domain along with personal experiences associated with DM1 DM2 and CMyD.  NO ENDORSEMENT IS MADE AS TO THE MEDICAL EFFECTIVENESS OR SAFETY OF ANY MEDICAL TREATMENT DISCUSSED HEREIN NOR IS ANY  WARRANTY MADE AS TO THE ACCURACY OF ANY INFORMATION PUBLISHED ON THE WEBSITE OR ON BULLETIN BOARD. However, the editor attempts to obtain reliable information from various medical and public information sources. Please consult with your Medical Professional concerning any treatments
based on your individual circumstances.

    (We are based in the litigation Capital of the globe after all)

Electronic mail

General Information: info@myotonicdystrophy.org
Webmaster: myotonicdystrophy@yahoo.com

Postal Mail

            International Myotonic Dystrophy Organization
            PO Box 1121
            Sunland, CA 91041-1121
            United States of America
            (866) 679-7954    (this number is toll free in the USA and Canada)
            (818) 951-2311

 

                   

           Contacts since Sept of 2000 when IMDO began operations

                                   This website has been active since 1997

 

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    Don't forget to sign the GUESTBOOK!   (Note lots of info here so it may take a minute to open)  Also donations to keep us operating are appreciated.  Please sign up for the mailing list below.

This page is intended for educational purposes only, to provide an overview of Myotonic Dystrophy for patients, their families, and health care providers. It is not  intended to recommend any specific treatment, nor should  it be used as a guide for self-treatment. Patients with  Myotonic Dystrophy should consult their physician or heatlh care provider before making any changes to their treatment regimen.

Send mail to info@myotonicdsytrophy.org with questions or comments about this web site.
Last modified: September 19, 2007