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Ehlers Danlos Zebra Life 🦓(hEDS, POTS, Arthritis)
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items I'm a mom diagnosed as an adult with Hypermobile (type) Ehlers Danlos Syndrome, as well as moderate osteoarthritis, and have family members living with all hEDS, POTS, and arthritis as well! The Bendy, Spoonie, Dazzle Zebra life is not for the faint of heart! If you or someone you know is living with hypermobility, hEDS, or arthritis, this list is for you! I will continue to add items so keep checking back!
Sections
5
Body Support Items
Awareness Apparel + Stickers
Nutrition & Wellness
Kitchen, Bed & Bath
Websites, Articles, Books and Videos
Body Support Items
Let's make it a little easier not to fall apart, shall we?
KT-Tape - the support system for Zebra's with loose and aching joints. My right shoulder has dislocated so many times I keep this on tap! I appreciate the pre-cut strips as cutting these to size can be a pain. Here is a helpful video for how to apply the tape to different areas of the body: https://www.kttape.com/pages/how-to-apply-kt-tape
Care Science Waterproof Kinesiology Tape, 40 ct - AMAZON
KT TAPE IS LIFE for anyone with hypermobile joints. Do they sell a Costco size one of these? I appreciate the pre-cut strips, and that you can wear KT tape for up to 3 days. Here is a helpful guide for applying the tape to different joints: kttape.com/pages/how-to-apply-kt-tape
KT Tape 2 x 3 Inches Beige Kinesiology Sports Tape (20 Count)- WALMART
Amazing little finger splints for hypermobile, or arthritic fingers! The splints keep your finger joints from hyperextending, and help prevent that dreaded “trigger finger” freeze. We have to use our hands and fingers all day long, so these are so helpful for maintaining joint health and minimizing join pain!
UAKIKAU Oval Finger Splint 8 pcs for Arthritis
Dislocated shoulders SUCK and the pain and instability during and afterward is awful. One of my biggest fears for a long time after a dislocation is it coming out while I'm asleep. This brace is incredibly helpful for offering support after a dislocation, while also minimizing movement and ensuring you keep your arm where you're supposed to while you're snoozing away. Definitely recommend!
ZENKEYZ Shoulder Brace for Rotator Cuff
Adjustable, soothing heat for tight or sore joints and muscles! This is definitely a comfort item and amazing across your hips and back, over the chest, across the shoulders, and so on.
GENIANI Large Electric Heating Pad 12x24
Ahhh relief! These beautiful, high quality rice bags are a lifesaver for aching neck, shoulders, back, or wherever else you drape or wrap the pack. You can warm it up in the microwave, or keep it iced - get two and use one for each!
Microwavable Rice Bag | Heating pad | Natural Healing | Cold Therapy and Spa Relaxation...
Arnicare is amazing for pain and joint stiffness without the strong smell that some pain relief creams have!
Boiron Arnicare Gel for Pain Relief of Joints, Muscles, and Bruises, Fragrance-free 2.6oz
Awareness Apparel + Stickers
Teaching people to think ZEBRAS, not horses!
Comfortable + quality EDS shirt! I keep this one in my closet for October, but it can really be worn all year. I am 5'7" 140lbs and a large is a nice roomy fit on me.
Ehlers-Danlos Halloween shirt, EDS gift, EDS Awareness, Funny Ehlers Danlos Syndrome skeleton hand shirt, Spooky Joints Halloween tee
True story! We have issues - most likely true, With our connective tissues - DEFINITELY true. Funny and comfortable, quality shirt!
Ehlers-Danlos Sydrome TShirt, Hypermobility EDS Tee, Issues With My Connective Tissues Shirt
This is the absolute truth! Very comfy tee and great quality!
Ehlers-Danlos Syndrome Warrior Shirt / Hoodie / Sweatshirt / Tank Top / Ehlers-Danlos Awareness Gift / EDS Support TShirt / EDS Fighter
Zebra Strong baby! Love this shirt! Great quality and awesome awareness message. There are many colors to choose from, but as usual, I chose black :D
Ehlers Danlos Syndrome Zebra EDS Awareness Tee
I thought this was SO hilarious, I had to have it! Gang sign / Beighton test overlap. Great for your laptop or water bottle!
Eds Sticker, Ehlers Danlos Sticker, Ehlers Danlos Awareness, Ehler Danlos Syndrome, Die Cut Sticker, Ehlers-Danlos Syndrome Rare Disease Eds
Our EDS mascot! Love this cute bandaged Zebra sticker!
Ehlers-Danlos syndrome bandage zebra - waterproof matte vinyl EDS sticker
I feel this in my soul. Years of tests with a result of, “Yah, I don't know… Your labs look great so…" Great water bottle/laptop/phone or wherever you want to stick it to look at when you need a laugh!
Spoonie Skeleton Sticker - Spoonie humor - Spooky season - Chronically Ill - Chronic Illness life
POTS (Postural Tachycardia Syndrome) - is no joke, and is a common EDS co-morbidity. It's important for others, especially strangers, to know what is going on if you have passed out, or are appearing dizzy, lightheaded, or confused. I recommend having this on hand, especially if you are out alone!
POTS Dysautonomia Emergency Medical Alert Tag | Postural Tachycardia Syndrome | POTS Symptoms Alert | Personalize Tag
Hilarious and true! Love these waterproof, high quality stickers!
Chronic Pain humor stickers, chronic pain awareness, funny health stickers , bottle sticker, laptop sticker
Chronic Pain Gang member here XD Love these awesome stickers and the important message they share!
Chronic Pain awareness, Invisible Illness stickers, bottle sticker, laptop sticker
EDS twister! This shop has such awesome, unique and witty invisible illness stickers! They ship from Canada so shipping is a little more pricey and takes a bit longer, but worth it!
Hypermobility Party Tricks medieval sticker // approx 3" matte vinyl sticker // waterproof sticker //
Nutrition & Wellness
Building the best body we can, even if the body is bendy and broken!
Zebra guts tend to have issues. We know that fiber is good and that lead is, you know, toxic to our bodies. When my GI doc recommended a fiber supplement, I was confused because - I'm a WFPB vegan - all I eat is fiber! Apparently, the Zebra gut is a wacky gut. Anyway, I did my research and found out that fiber powders are notorious for high lead levels! What! However, Yerba Prima was found to have the least amount of lead of all of them (from what I found). So, I mix one tsp. of Yerba Prima in with my water every day.
Yerba Prima Psyllium Husk Powder - 24 oz
Low Iron = Low Energy and can be something we struggle with as Zebras (and many other people too!). These Future Kind Iron + Vitamin C are among the few iron supplements I've tried that are both easy on the stomach, and actually increase your iron co... Shipping can be kind of slow with Future Kind, so make sure to set your subscription date (if you choose to do one) before you are going to run out of your current bottle!
Vegan Iron And Vitamin C Supplement - Future Kind
If you are looking for a multivitamin, I have to recommend the Hippo7! Iron, D, B12, Iodine, Omegas, Zinc and Calcium! It's got the essentials that many people - Zebras or not, tend to run low on, and does not cause stomach upset. I took Hippo7's for many years with no complaints, and even ordered extras to give to my adult kids.
Vegan Complete
For my POTS Zebras: If your doc has recommended a higher salt intake for you, LMNT drink packets are your JAM! Each packet has 1000mg sodium, 200mg Potassium, and 60mg Magnesium. They have many different flavors and bundles - I recommend this small variety pack to see if LMNT is right for you, and which flavor you prefer. If you aren't sure about adding salt to your diet, PLEASE talk to your doctor first.
LMNT Variety Pack
Turmeric, Cinnamon and Rooibos tea all have health properties that reduce inflammation and assist with pain relief. This tea has all three AND is really delish!
Numi Organic Amber Sun Turmeric Tea, 15 Bags
Turmeric is a superfood, and both turmeric and ginger are incredibly beneficial for pain relief and overall health! Fun Fact: *You DO NOT need to take it in pill form!* However, the best way to get turmeric in your body is the way that you're most li... Gentle on the stomach, and offer pain relief comparable to popping Advil, when done consistently - however you choose to take it!
Garden of Life Turmeric Joints Support 30ct
TONS of greens and nutrients in one little scoop! I add one scoop to my smoothie every day. Yes it tastes kind of like…grass..BUT if you blend it with fruit, you really don't taste it at all. Highly recommend for getting in your great micros even when you don't feel like eating!
Amazing Grass Greens Blend Superfood Vegan Powder - Original - 8.5oz: Target
Delish and clean! Love this vegan protein powder! I blend this up every single day with my psyllium husk powder and Amazing Grass greens powder! Excellent source of protein even on those days that your stomach says NOPE to food. Gentle on the belly and tastes great!
Warrior Blend Organic Protein - Vanilla by Sunwarrior for Unisex - 13.2 oz Dietary Supplement
Kitchen, Bed & Bath
Home hacks for living with hEDS and arthritis!
Have you ever subluxed your wrist joint trying to open a bottle or jar lid, or dealt with pain from your shoulder, wrist, hand or fingers while fighting a frustratingly tight lid? I have to recommend this opener! This makes things so much easier, especially, if you, like me, also have osteoarthritis, whose early onset is very common for Zebras. Give this a try and see if it helps you, like it's helped me!
5 in 1 Jar Opener for Weak Hands & Seniors
Simple tasks like chopping and slicing can be painful and challenging with hEDS and/or arthritis instability and pain. This knife is a game changer! Highly recommend!
Peta Easi-Grip Carving Knife, Right Angle
Dislocated shoulder, anyone? (Raise your hand carefully and only partway up) You know that terror for those of use who have loose shoulder joints and need to reach something overhead but fear that oh-so-familiar sensation of OH NO MY SHOULDER IS GOIN... Please, do yourself a favor and use a grabber/reacher tool. This one is awesome, easy to use, lightweight, and saves you the anxiety of a potential dislocation when you need something that is even just slightly above your head. Get your item off the shelf, and keep your shoulder safely in it's socket.
EZPIK 43" Foldable Grabber Tool for Seniors
Hip pain, knee pain and back pain, OH MY! We need sleep to heal, but pain makes sleep difficult! I waited way too long before ordering this leg pillow and have to say, it's made such a difference!
ComfiLife Orthopedic Knee Pillow - Memory Foam
Putting on shoes can be a challenge when your hands, elbows, shoulders, hips, back, and every other joint in your body say NO, thank you. Tugging on shoes from behind are a huge risk for subluxing fingers! (Believe me!). This long shoe horn helps to slide shoes on from a seated position, saving fingers, back, and all in between.
Long Handle Metal Shoe Horn for Seniors
Websites, Articles, Books and Videos
You're a medical mystery and no one is coming to save you. Be your own expert and the hero of your own story!
THE One-Stop Spot for all things EDS, from articles, studies, support groups, and resources. If you've gotten a diagnosis, or you are wondering if you might have EDS, this is where you should start.
The Ehlers Danlos Society: Home
MY Go-To for tracking my nutrients, and it's FREE! I have recommended Cronometer to people for years now! NOTE: There is NO specific diet for EDS, but it's critical to make sure we are getting all of our micronutrients (vitamins and minerals) and our macronutrients (Protein, Fat, Carbs), in order to avoid nutrient deficiencies that can hurt our bendy bod... You are able to customize your micro and macro goals, get suggestions for each micronutrient (which is very helpful!), and track your weight, water and exercise as well. Cronometer has multiple tiers for membership. I have always used the FREE tier a...
The Most Accurate Nutrition Tracking App | Cronometer
Being bendy is one facet of EDS, especially hEDS, and this book offers the WHY for the way our Zebra bodies do the things they do, and how we can help support our bodies and joints.
Managing Hypermobility: A Practical Roadmap
Awesome and easy to use symptom tracker! Tracking your chronic pain experience is SO important, especially leading up to a doctor or specialist appt. You need to be able to share how long you have been experiencing different symptoms, potential triggers, and what may have helped alleviate the pain or other symptom. This tracker makes it really easy!
Ehlers Danlos Syndrome Pain Tracker Journal
What the heck is EDS? Great video to share with others! Super helpful for explaining exactly what hEDS is, and what people with hEDS experience.
Ehlers Danlos Syndrome Explained Clearly
Fascinating video talking about the link between hypermobility / hEDS and anxiety! If you or someone you know has hEDS, give this a watch. It may be able to answer questions for you that you didn't even know to ask!
What is the link between joint hypermobility and anxiety? | Dr Jessica Eccles
Awesome short video series that addresses hypermobility and common movements we have to make all the time - such as sitting, writing, laying down, etc. Since we have to do it, let's do it with as little pain as possible!
Hypermobility Hacks
How to reduce your dislocated shoulder ONLY IN AN EMERGENCY - otherwise, please go to the nearest doctor or hospital. If you have to reduce/relocate your own shoulder, please go to the doctor afterward for x-rays and an exam.
How to Pop Your Shoulder and What to Do After
Great info on EDS and nutrient deficiencies!
Vitamin Deficiencies in Ehlers-Danlos Syndrome and hypermobility syndromes | The EDS Clinic
Dr. Michael Greger talks about the benefits of ginger for pain relief! Very helpful short video packed full of great info!
Ground Ginger to Reduce Muscle Pain
Should I exercise if I have hEDS? What kinds of workouts are safe? Here's some great info!
The Dos and Don’ts of Exercising with Ehlers-Danlos Syndrome – Patient Worthy
Izzy has been making EDS content for YEARS and has been such a wealth of information for Zebras! Now she is a Board-Certified Cardiovascular Genetic Counselor with that incredible combination of personal life experience and a medical background. This is the EDS jackpot of info right here!
Izzy K DNA YouTube channel
Free printable brochures that provide information for some of the 13 EDS types!
Printable Brochures and Materials Archives - The Ehlers Danlos Society