Not Invisible, Ehlers-Danlos Syndrome is My Nonprofit Organization dedicated to shedding light on Ehlers-Danlos Syndrome (EDS), an often invisible but life-altering condition. I strive to raise awareness, provide support, and create a sense of unity among those living with EDS, letting them know they are not alone in their journey. My mission is to foster understanding, advocate for improved care, and empower individuals affected by EDS to lead fuller lives.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a term given to several body tissues that connect, support, and help bind other tissues. People who have Ehlers-Danlos syndrome usually have Symptoms that consist of overly flexible joints that can dislocate and skin that's translucent, elastic, and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels. Treatment helps manage symptoms and monitor for complications. Options include drugs, physical therapy, and sometimes surgery.
Ehlers-Danlos Syndrome Awareness Day Proclamation Acceptance

Wh​at is Miserable Malalignment Syndrome?

​Miserable Malalignment Syndrome is an uncommon cause of anterior knee pain. It consists of proximal femoral anteversion (Femoral anteversion is an inward twisting of the femur), leading to internal rotation of the thigh, inward squinting of the patella, and significant tibial torsion (Tibial torsion is the twisting of a child's tibia.) Persistently painful knee malalignment patients will need medical correction of their poorly aligned knee. Surgical methods can involve: An osteotomy or cutting of the bone. Malalignment Syndrome can occur due to several factors, including genetics, history of injuries, and overuse. Our feet can also significantly affect our overall posture, especially if one has flat feet or leg length discrepancy.

At Quick Glance

600+ people spoken with
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5 schools currently met with
At least 1,577,600 people currently affected by EDS