EDS Syndromes

Living with Ehlers-Danlos and hypermobility spectrum disorders is no small feat. Frequent misunderstandings lead to minimizing of symptoms and lifestyle choices by parents, teachers, doctors, and friends.

The reality is that hypermobile Ehlers-Danlos and joint hypermobility syndromes are as common as 1 in 600 people. And even though other EDS types are more rare, they all share the reality of the more malignant features of hypermobile conditions.

Research into EDS and its 14 Sub-types is expanding on a daily basis, and the need for awareness of its prevalence and the malignant features of even the more benign end of the spectrum is critical to every sphere of society.

• Schools and Youth Development Programs
• Sports Programs
• Dance Programs
• Parenting & Development
• Occupational Therapy Practices
• Physical Therapy Practices
• Primary Care Clinics for adults and children.
• Hospitals, Emergency Rooms, Urgent Care
• Workplaces and HR Heads
• Churches and Civic organizations
• Military and Law Enforcement
• Daycares and Childcare Programs

Please consider Rachel Lee as a resource and tool for YOUR community’s awareness and growth.

The Autism Spectrum

Knowledge of Autism has made leaps and bounds in recent years.  But understanding of autism and autistic people remains, in many spheres, in the dark ages.  Clouded with negativity, fear and depression, Autism is treated as a disease that must be cured and fixed. As an autistic woman and mother of two autistic children, I am passionate about changing that narrative perspective.

Let’s talk about the incredible realm of non-verbal communication. Let’s talk about helping autistic children love who they are, and feel loved at all ends of the spectrum. Perhaps some of us need more support than others, but as long as we are considered alien or even inhuman by the non-autistic community, the many gifts, abilities and joys of the Autism spectrum will never shine.

The majority of individuals on the autism spectrum are ALSO on the hypermobility spectrum. A Spectrum which those of us with Ehlers-Danlos understand very well.  Joint pain, muscle aches, soft tissue injuries, nerve pain, binocular vision dysfunctions making teachers and parents think we can’t read or have uncontrollable ADHD, autonomic dysfunction making us constantly dizzy and off balance, and even more severe neurological and spine manifestations may be working against our efforts and the efforts of our loved ones to help us.

Unlike non-autistic people, however, many of us cannot tell you how we feel and how pain might be impacting our lives. From physical health and mental health, to friendships and learning to speak Autie, let’s talk, share, and change the spectrum of Autism from one of darkness to one of hope. Let me introduce you, teachers and students, to some of the most loyal, imaginative, dedicated people you will ever meet. Let me share with you, caregivers, about the love and joy your child may not be able to communicate in a way you can feel it.

Let’s Speak Out – About Autism Awareness.