Emery-Dreifuss is a muscle wasting condition. It usually begins in childhood or adolescence. The features, which make it unique and different from other muscular dystrophies, are the early development of muscle contractures, the distribution of muscle weakness, and the possibility that the heart may be affected in a particular way.
Greetings! This topic is here for all of you to introduce yourselves, so we can get to know you better. :) For starters, My name is Daniel. I was born on 4/24/92, and diagnosed with X-linked EDMD at the age of 5 or 6. At first, i became feared. I lost all of my friends and sank into a deep depression that eventually led to multiple suicide attempts. My parents divorce soon after my diagnosis did not help the problem at all. Late 2008, i moved in with my Father, and started attending the local private Christian High School (MCCA). It was there that my faith was strengthened, and layed the foundation for my spiritual future. Mid 2012, i underwent Tendon-Lengthening surgery on my left arm. Sadly, the surgery was a failure. The doctors believe that my bones have fused in a way, that i will not be able to extend my arm beyone 90 degrees, unless i have an extremely invasive surgery. I decided against the surgery, and figured that i can do most things with my current range of motion (granted, there are some things, i am unable to do). After becoming 18, i moved around a lot, before settling in Maine, USA. I currently attend Church services multiple times per week at Penobscot Bay Family Church. It is here, at PBFC, that i realized what God truly did for me when He died on the cross 2000 years ago. I realized that through the Holy Spirit, i have power over sickness and disease. In early April 2013, i claimed the healing that Jesus already paid for. I believed that i received it when i prayed, and i can profess to all of you today, that i have been healed of Emery Dreifuss Muscular Dystrophy! What the devil meant to have plague my entire life, has been removed by the power of Jesus Christ. Amen :D
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Arms stopped contracting at age 17 (90 degrees).
Attempted tendon-lengthening surgery on left arm (failure).
Healed from Emery Dreifuss, at the age of 21.
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