What is the cost of Congenital Myotonic Dystrophy tops $10 Billion Dollars in USA?

Medical Cost

When my son was born I had no idea that he would be an Over 5 Million Dollar Man.But he was born as a premmie and our medical bills started even before Day 1. The major cost of the disease concentrations on respiratory symptoms. For young people with this disease a strong effort is made to stabilize and improve respiratory function. The recovery period for individuals with this disease is very lengthy.

Moms confinement before delivery                              $200,000
85 day NICU stay                                                       $1,400,000
Ear Tube Placements (8)                                                 40,000
Special Education  Grade 0-6                                         200,000
Heel Cord Surgery                                                            25,000
Special Education grade 7-14                                        210,000
Caregivers state of Ca 2012-2016                                 450,000
Hospitalization 2010 (80 days)                                       875,000
Hospitalization 2015 (79 Days)                                      850,000
Hospitalization 2016 (89 days)                                       950,000
Cardiac Monitoring                                                            40,000

Currently we are at US$5.2 Million in Hospital and Medical Care for him. The insurance has picked up all the costs incurred, but still its a high price.

In the USA the incident of congenital myotonic dystrophy is 1/100,000. That computes to about 3,500 individuals with the disease. At a five million dollar overall cost the math computes to an overall projected cost could top 18.2 billion.

If the 5 million is a outlier the cost would still be in the neighborhood of $10 billion overall cost. That’s a very high cost to society.

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Wonderful Conference in San Fransisco

The conference in San Fransisco was awesome. Loved every minute of it. Met some wonderful people. I got to the conference on the Thurs night. It was an awesome night. Saw Molly white the new executive director she and Amy were running ragged trying to keep everything together. Had a chance to talk with a number of families that night you had come across country for the conference.

Unfortunately I came down sick that night. maybe some food I should not have eaten. I went to an Afghan Restaurant and maybe that did it. Anyway I was able to come and see the first session Cardiac issues which was a lot of fun and very informative.The next session was DM Care and the Advocate’s Role, Dr. Cynthia Gagnon. This was an excellent presentation. She at the end went over the importance of a nurse advocate in working with DM patients. Cynthia is from Canada and they have many resources available in Quebec to help. They are working on the new checklist for management of myotonic dystrophy which is part of an international consortium. Some thoughts here:

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Disability Benefits

Individuals with CMyD and MD may be eligible for disability payments (money) from the government.  There is a web site that gives more information and can help you apply. This information only pertains to US citizens.

It might be difficult to qualify for these benefits. The government is trying to cut back on the amount they pay for disability. The help of an expert might be required.


They have a book you can buy for $49.95 plus $7 shipping. The book is called “How to apply and win Social Security Administration Disability Benefits“. Also, if you wish they can assist in navigating the complex process of applying for benefits.

The General feeling is that a person in the US should apply for disability as soon as they are unable to work a standard 8 hour day for 5 days a week. It is important to apply as soon as possbile. With the complexity of a DM case you might want to consider a professional that would help you.

They don’t charge upfront but will take your case on a fee if they win basis.

Frederick Johnson 410/740-0454 for more info

During our visit to the Muscular Dystrophy conference in England we were able to talk with the social services people in England. For a disability the social security type system in England pays the individual more than what they were making when they were working. A nice system that perhaps the USA might adopt. There is additional information on social services at the 12th annual conference web site about this disease..
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