Understanding etiology of hypermobile EDS: a connective tissue disorder with complicated genetics

"Understanding the etiology of hypermobile EDS (hEDS): a connective tissue disorder with complicated genetics"
Christina Laukaitis, MD, PhD
Medical Genetics, Carle Illinois College of Medicine; University of Illinois Urbana-Champaign
January 17, 2023
Carl R. Woese Institute for Genomic Biology
University of Illinois Urbana-Champaign

[@user-dn9vd9xg9p]

If a patient is only tested for CMT under a grant study and has the gene for CMT...... How does the research know if it really is or not CMT if other research is not done that may show results that are similar?

[@user-dn9vd9xg9p]

Speaking of steroids.... In our state, Why is Prednisone over-RXd now versus what used to be prescribed as Decadron. These meds are used for the same symptoms yet Prednisone seems to have a different affect on the patient. The patient is told they are the same medicine ingredients. However FDA ingredients active and inactive do not reflect what physicians are telling patients. Why? Prednisone seems to have some side effects that are not tolerated as well as Decadron. Why has Decadron been pushed out by local doctors? Is it because of $$$ rebates?

[@user-dn9vd9xg9p]

This research is all and good....but from.what I have experienced personally and in my opinion, we have no truly knowledgeable doctors in Mississippi that is aware of CMT disease, the connective tissue disease, how to properly treat MS and even difficult to find good gastro doctors that seem to misdiagnose over and over. Our healthcare system has become a huge referral system with the gaslighting of patients and physician referral fees that tend to not stop. It's best to state you referred yourself if you can ...at least to lower your patient bill somewhat. Research is rarely passed to the medical community .... from scientists that research and research for years, rarely move the understanding and treatment, if known, of these diseases to physicians. Yet grants continue for research in the same medical and research entities whereas physicians work. It's two worlds.....Phd research vs MD knowledge. In addition, once grant research is done or even continuing , then the next step is usually to push new meds to test the research actually on the patients that have NOT been researched long enough and for high $ rebates to hospitals, research centers, pharmacists, etc. And sometimes offering payments to patients to participate in the research, AS the research. And, the meds may cause worse problems than the disease, hence class action recalls we see quite often later when meds are marketed to public to early. It's a pattern it seems that just doesn't quit. Scientists are studying for the life of their career many times to justify their existence, grant funding, high salaries, reputations and credentials, and big grants that flow in from the research and meds to these taxpaid billion dollar supported nonprofits. All about the money 🤑. They have become dependent upon grants. All in my opinions........

[@user-dn9vd9xg9p]

Could any of these changes be due to mRNA or approved rDNA generic drugs that were approved to be manufactured and distributed thru generics especially, supposedly, diabetic injection pharma? Correct? How do we know these rdna generic, mRNA or bio similar man-made drugs are not causing these problems?

[@user-dn9vd9xg9p]

If ya don't have the research in your state and no grants for various neuromuscular and genetic diseases, the patients remain untreated and physicians are as rare as our salamanders and red headed woodpeckers. So many symptoms are similar to others..... So if ya don't have the research grants for the various neuromuscular diseases...people suffer. What is the difference among all the neuromuscular diseases, lupus, MS, CMT, and the connective EDS? How is testing differentiated among these and more? If only the diagnosis are based on symptoms not genetic or mother testing then the decision is made by the doctor. And, if you have 2 doctors from 2 separate clinics, you will have two diagnoses. If the 2 doctors get are in the same clinic, they back up each other of the one diagnosis. Reality. . ... Docs just will not say anything that bucks the former doc's diagnosis if they work for the same employer which causes patients to continue to suffer due to misdiagnosis and wrong pharma treatments. Reality!