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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Common Antibiotic Might Help Treat Myotonic Dystrophy Type 1 – Promising Therapy

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In a study published in December 2015 in a peer review journal researchers from Japan and Poland found that a commonly used antibiotic might assist in the treatment of Myotonic Dystrophy. This is a sort of stunning discovery as there is no treatment identified to treat the disease. Treatment now consists of reducing symptoms.

The researchers first began by screening antibiotics. In a screen of 20 antibiotics 2-3 were found to have some potential with the disease.When screening the drugs they first used mice cells and lab equipment to find the most promising compounds (drugs). . Erythromyicin was found to have the highest attraction to the RNA CUG expansion (The opposite of CTG repeats in the DNA) Erythromycin was the drug that the researchers chose to study. Click here for the screening graph Muscleblind and Various antibiotics and compounds

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How does Myotonic Dystrophy affect the brain and higher level functioning

A recent study gave more information on how Myotonic Dystrophy affects the brain. This information is important as treatments are being developed and there are many questions on whether this will help with brain related issues. The study below gives information on white matter and gray matter in the brain that were obtained with MRI studies. The Gray matter seems to give some indication of how a patient may be affected with The various symptoms of myotonic dystrophy.  Here is a summary of the study. Click Below to get the full study in PDF

 

 

Genetics affect the Brain May 2015

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The “Golden”18

Recruiting for the Myotonic Dystrophy Drug study is beginning. You must contact the individual centers to insure that you may have a chance to be included in the study. The study has only a very limited number of individuals that can be included. If you have joined one of the registries for myotonic dystrophy….this is not sufficient or enough. Call or email the centers as soon as you can and ask to be included in the drug trial if you meet the criteria.

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Full Phase I Drug Trial Recruiting for Myotonic Dystrophy (DM1)

This week ISIS pharmaceuticals announced the commencement of recruiting for Phase I of the Myotonic Dystrophy Drug Trial. This is tremendous news for the myotonic dystrophy community. The promise of scientific research to define the DNA site, identify the cause of the disease,  then begin to develop treatments that would reverse the problems in the cell are culminating  to the promise of hope for all that suffer from this horrible affliction.

If you want to participate in this study you must act quickly and contact the centers that are conducting the research. Find the closest location and contact the person via email or phone. You must meet all (meaning all) the qualifications for the trial. The full information is on CLINICALTRIALS

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