Helpful Links

Over the years of dealing with my illnesses I’ve accrued quite the collection of resources. I’ve gathered many of them here, in one place, in the hope that this becomes a useful compilation to help educate others about, spread awareness of, and be a resource to those who are fighting these diseases every day.

Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders

 

Handouts

Dysautonomia & Postural Orthostatic Tachycardia Syndrome

 

Mast Cell Activation Disorders

 

Concussions and Persistent Post Concussion Syndrome

 

Handouts

Resources

All of these resources have (or are) been personally read by, listened to or used by me. I am not a medical practitioner and cannot dispense any medical advice, nor am I affiliated with any of these products in any way, but it is my I hope that you will find at least some of them as useful as I have.

Books

But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain
by Sherri Connell


Sherri Connell became a chronic pain warrior at age 27 when she was diagnosed with Multiple Sclerosis. As she went from an active young woman to a wheelchair bound nearly paraplegic, her family and friends had a hard time understanding her because she "just didn't look sick." This easy-to-read book is a compilation of her thoughts and gives a voice to how many of us with chronic illnesses feel. It offers practical tips and ideas on how loved ones can best support those with chronic illnesses, because just because we look good, doesn't mean we are.

Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
by Dr. Lawrence Afrin

Dr. Afrin saw many patients that were all suffering from chronic multi-systemic inflammation, and in 2008 he began to understand that the underlying diagnosis was a newly recognized type of mast cell disease called Mast Cell Activation Syndrome (MCAS). He soon learned that MCAS is far more prevalent than the only other mast cell disease previously known to medicine (Mastocytosis) and that most MCAS patients can find significant relief of symptoms with targeted medications. This led him to focus in this area pursuing research and helping educate others about this previously unknown disease. It is from this desire to educate that this book was written. It is his hope that this book will help lead some MCAS patients on their journey to a diagnosis or to improvement sooner rather than later.

Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders 
by Diana Jovin

This book brings together both physician, patient and parent perspectives on the diagnosing and treating of hEDS/HSD. There are 21 specialists ranging from surgeons, to reproductive health specialists, to neurologists, to nutritionists and many more who came together to write about the impact hEDS/HSD has on their particular bodily system. With the compartmentalized Western medical system we often face today this book is a wealth of information all in one place.

Living the Invisible Disability: Coping with Post Concussion Syndrome, Traumatic Brain Injury and Depression
by Hannah Andrusky

One second life was going great, the next Hannah was in a serious auto accident with her son that left her with a severe concussion. In her retelling of her journey from accident to healing, she shows the darkest side of fear and loneliness punctuated only by the smallest of victories. This candid account of her story shows the realities of living with Post Concussion Syndrome and the devastating effects it can have on an individual and their family, while ultimately not allowing herself to be beaten.

Hypermobility Without Tears: Moving Pain-Free With Hypermobility and EDS
by Jeannie Di Bon



Jeannie Di Bon is a movement therapist with her own diagnosis of hEDS that leaves her uniquely qualified to understand the hypermobile body. This book is arranged into six sections, breath, relaxation, proprioception, stability, balance, and posture, based on Jeannie's six key principles of pain-free movement. It is her goal to get you back into a 'no pain, no strain' lifestyle despite your hypermobile body.

Podcasts

 

Products

Body Braid

Quote from the Body Braid Website: "Wearing the Body Braid creates a gentle pressure on your skin, and this pressure creates a link between your movement and the stimulation of your sensory nerves. Your brain receives enhanced information about where your body parts are, and how they are moving relative to each other. The Body Braid’s effect is similar to that of turning up the volume of a hearing aid, which helps your sense of hearing, or putting on a pair of glasses, which help your sense of seeing. Putting on a Body Braid amplifies your sense of coordination and posture, also known as proprioception or kinaesthetic awareness."

Embr Wave 2

Quote from the Embr Labs Website: "Clinical research has shown that wearing the Embr Wave® provides relief from temperature discomfort and improves sleep. At the touch of a button, activate your thermal senses to change how you feel temperature through the use of precise cooling and warming sensations."

Zebra Splints

Quote from the Zebra Splints Website: "We are a trusted supplier of high quality affordable ring splints. Each splint is precision handcrafted by a professional silversmith with 20 years of experience in the jewelry industry and 9 years dedicated experience in the design and fabrication of comfortable and effective metal ring splints. It has always been our main goal to keep pricing low so that our splints are as accessible as possible, so unlike many other places, we sell at cost."

Tune Up Fitness Massage Balls

Quote from the Tune Up Fitness Website: "Discover our wide selection of Massage Balls. The Roll Model® Therapy Balls are designed for trigger point, pressure point, self myofascial release. Use them separately or together as a peanut ball for pain relief and relaxation. Remember, it doesn't have to hurt to work!"

Novaalab Red Light Therapy Pads

Quote from the Novaalab Website: "Red light therapy is a treatment that may help skin, muscle tissue, and other parts of your body heal. Red Light Therapy helps injured cells repair themselves and become healthier by giving them the energy they lack. Red Light Therapy works its “magic” by delivering safe, concentrated wavelengths of specific light into your tissues (up to 1 inch for infrared), where it’s absorbed by your deep cells. It means it can reach deep injured cells that no other topical treatment can. Red light therapy helps so many health conditions that more than 3,000 clinical studies have proven its benefits. That's why the Novaa Deep Healing Pad is recognized as a medical device by the FDA."

NormaLyte PURE

Quote from the NormaLyte Website: "NormaLyte PURE is a special formulation that does NOT contain any artificial sweeteners, artificial flavors, colors, dyes, or preservatives. The formula is great for highly sensitive individuals with various chronic conditions that require substantial amounts of electrolyte supplementation. NormaLyte contains the sodium equivalent of 4.4 Grams of Table Salt per Liter while tasting like plain water."

*Larger packages available on Amazon*

QuintEssential Hypertonic 3.3 Sachets

Quote from the QuintEssential Website: "100% pure seawater, with up to 78 minerals & trace elements. Ideal for fast acting hydration and mineral replenishment. Use when a revitalizing effect is desired or to support exertion from physical or mental effort."

*Larger packages available on Amazon*

Saltstick Fastchews

Quote from the Saltstick Website: "The ONLY chewable tablet that is formulated to closely resemble the electrolyte profile lost in sweat: sodium, potassium, calcium and magnesium."

*Available on Amazon*

Flare Calmer Audio Earbuds

Quote from the Flare Audio Website: "Calmer® is a life-changing earplug alternative that reduces annoying noises without blocking sound. They are hollow and accurately reflect sound into our ears making trigger noises much more manageable."