Ehlers-Danlos Syndrome (EDS) is an overarching genetic disorder that refers to 13 heritable connective tissue disorders. Each type of EDS has its own genetic mutation, inheriting pattern and symptoms. Broadly speaking, these genetic mutations affect connective tissues; specifically, the tissue structure and function of collagen in the skin. This, in turn, impacts the strength andContinue reading “What is Ehlers-Danlos Syndrome?”
Category Archives: Health and Wellness
Art for Equity Demonstrates the Need for Accessible Healthcare
The Raw Beauty Project is an art platform that celebrates women with disabilities. It’s based in Miami, Florida, where I lived for a few years in graduate school. I still miss the weather, the people, the food, and the fun! So, when Raw Beauty Project founders Wendy Crawford and Dr. Susan Solman contacted me aboutContinue reading “Art for Equity Demonstrates the Need for Accessible Healthcare”
Quantum Power Wheelchairs and Living with Multiple Sclerosis
March is Multiple Sclerosis (MS) Awareness Month, a time dedicated to educating the public about the effects of the chronic autoimmune disease and finding solutions that improve the lives of those living with the condition, which includes over one million Americans. Quantum power wheelchairs can enhance the mobility and independence of those living with multipleContinue reading “Quantum Power Wheelchairs and Living with Multiple Sclerosis”
What to Know About a Feeding Tube
The week of February 6-10 is Feeding Tube Awareness Week and is officially recognized on the National Health Observances calendar each year. In this blog, I will talk about feeding tubes, a life-saving intervention, how a feeding tube saved my life and break down some of the myths associated with feeding tubes. What is aContinue reading “What to Know About a Feeding Tube”
People with Disabilities and Preparing for Winter Weather
In my previous blog, I explained some of the reasons as to why people with disabilities may be more susceptible to cold weather and need to take extra precautions. So, what can people with disabilities do to prepare for extremely cold weather? Here are some tips. Dress in Layers Wearing layers can help keep youContinue reading “People with Disabilities and Preparing for Winter Weather”
There is Life After a New Disability Diagnosis
When I was first diagnosed with a disability and realized I could no longer walk, it hit me like a ton of bricks. I was diagnosed with an auto immune disease that attacks your muscles. I lost 50 percent of my muscles in my legs and arms. For what seemed like an eternity was onlyContinue reading “There is Life After a New Disability Diagnosis”
How Extreme Weather Threatens People with Disabilities
A few days before Christmas, our area was hit with an arctic blast that dropped temperatures well below zero. On the first morning of the flash freeze, we woke up to a cold house. Our furnace wasn’t working. I am so incredibly fortunate that my cousin is an HVAC expert and was available to comeContinue reading “How Extreme Weather Threatens People with Disabilities”
Three Ways My Quantum Wheelchair Helped Me with Recovery
This past month, I had surgery on my spine and recovery was a completely different experience than any surgery I’ve had before. A couple of years ago, I fractured a bone in my spine. Four years later, the bone never set and the existing metal in my spine was also broken. We needed to repairContinue reading “Three Ways My Quantum Wheelchair Helped Me with Recovery”
Best Winter Clothing Tips for People with Disabilities
Winter has never been my favorite time of year. For many of us with physical disabilities, colder weather can affect our mobility and have various other impacts. That said, living most of my life in climates that have four distinct seasons has caused me to develop a strong cool weather routine. This year, I’ll experienceContinue reading “Best Winter Clothing Tips for People with Disabilities”
My Thoughts on Why I Wear a Mask
It’s been almost three years of thinking about and planning around COVID-19. We’re all sick of worrying about the illness. For those of us who are at an increased risk if we become infected, we can’t ignore its presence. Even with this, I’ve changed my approach over the last few years (and even months). I’mContinue reading “My Thoughts on Why I Wear a Mask”