Familes looking for answers
Hello, I am Dr. Mike. An estimated 255 million people worldwide are suffering from Ehlers-Danlos Syndrome, a debilitating disorder without a cure. Those with the disorder have a 50% chance of passing it on to their children. The goal of our Ehlers Danlos Project is to not only make the public and health care professionals more aware of the many devastating medical consequences associated with this poorly understood genetic disorder but also to bring clarity by determining the genetic cause and developing a genetic test for it.
What is Ehlers-Danlos Syndrome?
EDS is a group of inherited disorders that mostly affect the skin, joints, and blood vessels. Symptoms include overly flexible joints that can dislocate, and skin that’s translucent, elastic, and bruises easily.
Our goals
Bring attention to Ehlers-Danlos Syndrome
Continue our clinical and basic research at the Boston University School of Medicine to identify the genetic cause for this common disorder, develop a genetic test and initiate new treatment strategies.
Educate those with EDS hypermobility type about symptoms and treatment options
Assist families with EDS hypermobility type and alert them to the associated medical conditions
Alert pregnant women with EDS that they have a high-risk pregnancy
Meet Dr. Mike
Our project is led by Dr. Michael F. Holick, a recognized leader in the diagnosis and treatment of Ehlers-Danlos Syndrome (EDS) and metabolic bone diseases, and the leading authority on vitamin D.
His breakthrough discoveries have shed new light on bone and capillary fragility disorders in infants, children and adults.
Testimonial
Allison Burke
Our family has been greatly impacted by the work of Dr. Michael Holick, a man who has dedicated his career to important advances in medicine, including his work on the diagnosis and treatment of Metabolic bone diseases, genetic disorders of collagen and elastin matrix including Ehlers-Danlos Syndrome (EDS).
The work that Dr. Holick does has changed so many lives, including the lives of individuals in my own family. Michael is the definition of a physician that goes above and beyond for his patients, caring about them holistically, and working with teams of physicians to ensure their care. Michael is passionate about his work and cares deeply about the well-being of his patients. It is this passion and dedication that drives his relentless pursuit of medical breakthroughs, but also puts him in conflict with those that want to protect the status quo.
Despite his recent published findings that one gene, CCDC134, can have mutations that cause bone fragility in children even before birth (Children Journal – Fetal Fractures in an Infant), which supports his long-held belief that there is at least one other genetic cause for infantile fractures other than osteogenesis imperfecta (OI) and child abuse (non-accidental trauma), he has still lost his practice at Boston Medical and needs our help to fight back and continue to advocate for all those that he cares for.
Vitamin D & me!
Dr. Mike has gained worldwide recognition for being the first to isolate and identify the active form of Vitamin D. He also played a key role in educating the public about vitamin D deficiency and its associated health risks. Watch Dr. Mike’s interview in the link below to learn more about the importance of Vitamin D sufficiency in pregnant and breastfeeding mothers. He will also debunk the common misconception that “you can just get Vitamin D from going outside.”