Top 25 Picks for Dysautonomia Gear

Ok, folks, after a good deal of scouring the internet and deep thought, here are our Top Picks for Dysautonomia Gear!

Some of these items are ‘awareness’ oriented, some have been chosen for their potential for personal inspiration (both blatant and subtle), some for functionality, and some for their role in funding research and support for the Dysautonomia community through a portion of the proceeds being donated to related organizations.

We’ll start out with the Top Picks for Awareness Gear in our specific special color – turquoise! While blue (and even red!) are being used for awareness of Dysautonomia, my personal favorite is turquoise, AND it is the ‘official’ color adopted by Dysautonomia International…so I’m going with it. 😉 

Rope Bracelets by WhatKnotShop on etsy.com

rope bracelet combo

Tie one on for the Dysautonomia Foundation with this special custom beach teal blue one button rope bracelet.

A portion of the proceeds from the sale of these limited edition bracelets supports the Dysautonomia Foundation.

*Personal review coming soon! This artist is providing a sample of his work and we will let you know all about it as soon as possible. So excited! I would love for this to be a ‘thing’ in the Dysautonomia community. I love the color, it is gender neutral, and it’s casual and cool. How great would it be to see someone else wearing one and know that you aren’t alone out there?

Believe Dysautonomia Awareness Headband by FeistyFreckle on etsy.com

believe headband

I love this for the younger Dysautonomia warriors out there among us. It is fresh and sweet, and can start a day off as a reminder that life isn’t over just because you are facing this illness. 🙂 We can believe in ourselves, others, and hope for a cure or treatment in the future!

 

 

 

Dysautonomia Awareness Bracelets by Bravelets.com

bravelets combo

These bracelets are subtle and hip, while reminding you to ‘be brave’ and sport our fabulous turquoise!

When you purchase one of these bracelets, $10 will be donated to Dysautonomia – and you can choose to which organization (from the list of 6 great options) the money will go to!

Dysautonomia Nail Wraps by Heather & Jamberry on dysautonomiainternational.org

jamberry nails

Since this is a custom wrap exclusively designed and printed by Heather Schurr for October’s 2014 Dysautonomia Awareness Month celebration, you will not see it on the main Jamberry website. In order to purchase these wraps and support Dysautonomia International, you must purchase a gift certificate from Heather for each sheet you wish to order, select Dysautonomia International at checkout, then email Heather at schurrhn@gmail.com with your code(s). Heather will ship the product to you.

In celebration of Dysautonomia Awareness Month, available through the end of October 2014, 30% of the proceeds from every purchase made through Independent Jamberry Consultant Heather Schurr’s website (a fellow POTS/NCS patient) will be donated to Dysautonomia International.

 

Feeling Spoonie?

Check out these awesome spoon themed pieces. I found so many awesome spoon themed jewelry, that I will be posting a Top Picks specifically for them soon – but for now, here are my very favorites…

Living with Pots Necklace and Invisible Disibility Decal by TachyAshleyDesigns on etsy.com

living with pots combo

This shop has several very cool items for Dysautonomia – this necklace is specifically for POTS, and I love it, but she has a variety of Dysautonomia items that are very stylish. I also like the decal, which makes a statement without being sarcastic, which can be useful in spreading awareness.

Spoon Bracelet by Aquamarine Crystal by Spoonfest Jewelry on etsy.com

spoonfest bracelet, blue

This is not specifically for Dysautonomia, but the spoon theory connection and the aquamarine/blue crystal really jump out at me as an incredibly meaningful piece of jewelry for those of us with Dysautonomia. It would certainly inspire me to wear it!

 

 

Mens Spoon Rings by dremeWorks on etsy.com

dremeworks mens rings

For those men out there with Dysautonomia who can relate to the spoon theory but can’t imagine (or find) a manly piece of spoon jewelry, this is it! I love the style of this artist and the masculinity of the designs he works with.

 

 

 

 

In Case Of Emergency, Break Glass Necklace by lglitterbugl on etsy.com

In case of Emergency, break glass necklace

This necklace is actually for lupus/fibromyalgia but I have arranged with the artist to make a Dysautonomia specific piece by special order, if you contact her. It cracks me up, and I love the lighthearted take on the spoon theory. And you were probably diagnosed with fibro first anyway, right? 😉 I know I was!!

(This particular item has sold, but you can special order one.) 🙂

 

 

Subtle Support

If you are looking for something elegant and that supports Dysautonomia, while not being overtly “awareness” oriented, check out these lovely pieces which help to fund research and support Dysautonomia patients…

Familial Dysautonomia Awareness Bracelet by Etta Fainblatt on familialdysautonomia.orgfamilial dysautonomia bracelet

Etta Fainblatt, who lost her son to FD, has designed this beautiful bracelet
to help fund research for a cure for FD. Crystal and cobalt blue Swarovski beads, Sterling silver spacers, connector and an attractive boy and girl charm combine to create this stunning piece of jewelry can be had as a wrist or ankle bracelet.

Live and Let Live Bracelet by Catherine M. Zadeh on familialdysautonomia.org

live and let live gold-vert

Simple, stylish bracelets encouraging us to keep going, and reminding us to “live and let live” while helping to further research and treatment for Dysautonomia. (Yay!)

Proceeds from the sales of these bracelets will be used to fund FD research and treatment.
A tax-deductible receipt will be issued by the Dysautonomia Foundation for the proceeds
generated by the sale of the bracelets.

 

 

Pearls of Hope Set by CeCe Hillman on dynainc.org

22pearls_of_hope22_photo_

The Pearls of Hope collection features stylish sterling silver pearl pendants, handmade by CeCe and her family.  Both pieces are available in traditional white pearl (pictured) or in baby pink pearl and the necklace is available on 16, 18 and 20 inch chains.
Proceeds from Pearls of Hope go to benefit Disautonomia Youth Network of America.

Clothing

There are tons of shirts out there but these are the coolest, in my book. If you follow the links, you can check out all of the other styles as well!

Womenswear

Dysautonomia Cool Wings Hoodie on Cafe Press

Dysautonomia Hoodie on Cafe Press

Hope, Faith, Cure T Shirt on Zazzle.com

Hope, Faith, Cure T Shirt on Zazzle

Drop it like it's POTS on zazzle

Drop it like it’s POTS on Zazzle

Dysautonomia Blue Ribbon T Shirt on Zazzle

Dysautonomia Blue Ribbon T Shirt on Zazzle

Menswear

Men's Dysautonomia Awareness Hoodie

Men’s Dysautonomia Hoodie on Cafe Press

Dysautonomia Wings Men's T Shirt

Dysautonomia Wings Men’s T Shirt on Cafe Press

Invisible Illness t for men on zazzle

Invisible Illness t for men on Zazzle

Dysautonomia Wings Men's T Shirt on Zazzle

Dysautonomia Wings Men’s T Shirt on Zazzle

Chronically Fabulous Gear by FabulousByKat on etsy.com

chronically fabulous combo pic

“Just because you are chronically ill, doesn’t mean you can’t be Chronically Fabulous.” Not specifically for Dysautonomia, but so cool I had to include it. 🙂

 

 

 

 

Useful Things

There are a number of items available that can be encouraging and practical while making a statement for Dysautonomia at the same time! Here are a few that I especially love…

For Hydration

I love the idea of having a dedicated water bottle to encourage ourselves while letting others know why we ALWAYS have water with us! A little awareness and personal reminder all at once…

I steered away from bottles that had to be twisted on and off to drink from them, but there are tons of options out there. These links will take you to the main pages where you can noodle about to pick your own favorites.

thermos combo

 

Thermos water bottles on Cafe Press

This is the type of water bottle I have for my daughter (but hers has Barbie on it) and it has been a very sturdy bottle. She is 5 and dropped and busted three other water bottles I bought at the same time, already!

 

 

 

igloo coolers combo

Igloo Insulated Coolers on Zazzle

Since we always need to stay hydrated and keep things like water and electrolyte drinks on hand at all times, I think these insulated coolers are perfect. The beverage dispensers come in 4 sizes from big to ginormous and the can coolers come in “12” and “24” can sizes…though not sure what that equates to in water bottles and Gatorade. 😉

 

For Motivation

We can all use a little reminder that we can keep going when it doesn’t feel like we can. Here are a few little reminders for the extra tough moments…

travel mugTravel Coffee Mug on Zazzle

Sometimes coffee is all that keeps us going (for those that can tolerate it, of course). I especially love this “Losing is not an option” mug because that’s pretty much why I drink coffee!

 

 

 

pin comboAwareness Pins on Zazzle

Need Flare? Here are 352 options for Dysautonomia awareness pins!

 

 

 

 

key chainStrong Key Chain on Zazzle

I’m not a burden, I am a human being. I’m not lazy, I am sick. I’m not complaining, I am explaining. I’m not helpless, I am STRONG.

I dig it.

 

 

 

 

hope matters magnet

 

Hope Matters Magnet on Zazzle

When all you can do is drag yourself to the fridge for some hydration or food, a little ray of hope might be just what you need to keep going…back to your chair. 😉

 

 

pillow

 

Never Give Up Pillow on Zazzle

We all know there are days (sometimes weeks) where getting vertical is just not an option. When hope feels like a distant memory, maybe snuggling up with this pillow can remind us that it isn’t over. There will always be another good day (or week!)  coming…eventually. 😉

 

JournalJournal on Zazzle

If you do happen to be stuck in bed, or just need to vent, perhaps reminding yourself that you “aren’t going down without a fight” and writing about it would help. 🙂

 

For the Service Dogs

There are a lot of Dysautonomia Service Dogs out there, and these accessories can add a little awareness to their style. There are several coordinating designs for collars, leashes, and tags, but these were my fav’s…

dog collar

Dysautonomia Ribbon Dog Collar on Zazzle

 

 

 

dog leash

 

Dysautonomia Dog Leash on Zazzle

 

 

dog id

 

Dysautonomia Dog ID Tag on Zazzle

 

 

 

 

Each Top Pick item or artist/shop has been chosen purely on their own merit and awesomeness rating. After each item was chosen, I contacted the artist/company to see if any special orders would be welcomed, if any discounts were possible (many were not because they already are donating proceeds, or other good reasons), if I could try out a sample to personally review for our readers, or if any commissions were possible if you guys decide to buy anything (hey – that’s still supporting Dysautonomia, bc I am a fellow patient!!). 😉

My choices were not affected in any way by the decisions and responses of the shop owners. but I have stated in each description which items may be special ordered/designed, offer discounts, support particular organizations, and/or any personal benefit I may have if you purchase a particular item. 🙂

Cafe Press and Zazzle items are affiliate links, and if you decide to purchase that item through the link on my site, I will be paid a commission. Through October 2014 (Dysautonomia Awareness Month), 50% of my commission will go to Dysautonomia International to help fund their research and work for our community. 🙂 

The Bullet Point Experience

When you read through a list of typical or potential symptoms of a disorder like Ehlers-Danlos Syndrome, you frequently are scanning a series of bullet points.

 

  • Tendinitis and bursitis may occur
  • Degenerative joint disease occurs at a younger age than in the general population
  • Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition
  • Fatigue and sleep disturbance are frequently associated
  • Easy bruising is quite common in all types of EDS, frequently without obvious trauma or injury
  • Functional bowel disorders are common and underrecognized
  • Autonomic dysfunction. Many individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance with syncope or near syncope
  • Periodontal disease (friability, gingivitis, gum recession) occurs in some individuals with EDS
  • Psychological dysfunction, psychosocial impairment, and emotional problems are common. Specific manifestations may include depression, anxiety, affective disorder, low self-confidence, negative thinking, hopelessness, and desperation

 

This particular list was written by the geneticist who diagnosed me at Johns-Hopkins. You probably feel a little overwhelmed with just these few hand picked symptoms that jumped out at me as I reviewed them for this post. It all sort of blurs together a little bit and when you read them like this, they all seem relatively insignificant.

 

Ok, so autonomic dysfuntion…orthostatic intolerance…syncope…it doesn’t say much about any of that. Really, how bad can one little bullet point in a list of 25 things really be? I’m sure it is the collective experience from all of these ‘potential’ symptoms that makes it uncomfortable…right? Well, sure. Of course it all piles up to be pretty intense, but that bullet point with lots of big words you didn’t feel like thinking much about (since there were so many bullet points to read, anyway)…? As it turns out, autonomic dysfuntion is pretty life changing all by its little self. Just that one little insignificant, easily scanned over bullet point in a sea of things that can fall apart on you…apparently it can keep you from living life as you knew it forever. Yup.

 

Apparently, and I can attest to this, orthostatic intolerance can mean that any time you sit or stand up you might experience that ‘syncope or near syncope’ that seemed so…so bullet pointy until you woke up one day and could’t stand up for two minutes in a row without a ‘near syncope’ experience. That means passing out, by the way. It may mean ‘just’ blacking or ‘graying’ out for a few seconds, but for a lot of people, that means they just pass out every time they stand up. They can’t work. They can’t take care of their children. They can’t finish school. They can’t drive themselves anywhere. Not so insignificant after all, that little dismissive bullet point on a long list of symptoms.

 

My most recent Bullet Point Experience (BPE) happened today. You remember that one about periodontal disease? It was pretty far down the list. You probably stopped really reading them by that point, or at least they started seeming less significant. On the real lists it’s even worse – there are so many that you start brushing them off because it isn’t something you deal with in your EDS…until you do.

 

You go to the dentist and they ask if you sip on soft drinks all day or suck on lots and lots of hard candy.

Um…maybe? I mean not that much but maybe I underestimate myself?

About a third of your teeth have the enamel worn off in big spots and that’s bad. You should take better care of your teeth.

 

The more you think about it, the more you decide that sounds suspicious. You head back to your lists of things that can fall apart if you have a connective tissue disorder. You use Google…because you have learned that you can figure these things out better than most of the doctors you see, since they usually haven’t even heard of Ehlers-Danlos. If they have, they just think it makes you more bendy and stretchy…it certainly can’t be the reason that your enamel is wearing off of all of your teeth for no apparent reason.

 

Except that it is. Remember that little bullet point about tooth decay? It seemed irrelevant the first time you read over it, and it didn’t sound all that bad even if it did happen to you.

 

Now you do a little more investigating, and low and behold – those ‘canker sores’ you have had your whole life have been thanks to your shoddy connective tissue. Your battle with gum disease when you take obsessive care of your teeth? As it turns out, your gums may recede prematurely, and your teeth may all fall out. That sounds great.

 

And those spots where the enamel is wearing off on a third of your teeth? Apparently, ‘the connective tissue defect can affect the hard tissue of your teeth.’ The enamel can wear off and detach from your teeth. In fact, your teeth can just start to CRUMBLE as the enamel wears off. I found that here (again, pretty far down on the list. It was the last sentence on the third bullet point on page EIGHT)…but how can that not be on every list? Like AT THE TOP?

 

Your teeth may just crumble and fall out.

 

That’s like a bad dream. It’s actually exactly like a bad dream I had last year!

 

Maybe my body was trying to do a little foreshadowing so I wouldn’t be so surprised to find that out on my own one day. “Early onset of periodontal disease” sounded so vague and insignificant on the short little bullet point, half way through a paragraph, on the eighth page of a pamphlet.

 

As I continue on this journey of discovery and determination to be resilient, and as I participate in national and international support groups for EDS and Dysautonomia, I learn more and more what it means to experience the bullet points. My hope is to share a little bit of insight into what they mean in real life, as they are lived out by real people. Maybe you have EDS, or maybe you support someone who has it – or maybe you’re just curious – but hopefully these posts in the EDS series will help tell a little bit more of the story. Maybe it will make a difference for someone who didn’t realize just how significant a little bullet point in a sea of symptoms can really be.

 

If you have a story to share about how your EDS is experienced – we welcome the good and the ugly – please contact us so we can pass it on. Maybe your story can be an encouragement to another traveler on this journey.