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It’s a Grand Opening & Remodel!

We’ve gotten our store open in record time and we want to celebrate with you by giving big discounts for our Grand Opening. From now until December 1, use our exclusive code to get 25% off every order! Just read on to get your code and visit the store. First, we’ve got a wee bit of business to cover and we hope you’ll read on to learn more about what the Zebra Pit Shop is all about and our plans for it!

You've relied on us for years for innovative and accurate health and wellness information for EDS, MCAS, POTS, Fibromyalgia, ME/CFS and more. Now we have a shop! Learn what it's all about, how we plan on growing our products and why we decided to start with a line of our own especially branded products perfect to help you raise awareness the way you choose!

Why Open a Shop?

The easiest answer to this question is that it helps us to keep doing what we love to do, and that’s bring health and wellness information and resources to help people with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders and/or their common comorbid syndromes and conditions. This includes ME/CFS, Fibromyalgia and other soft tissue pain disorders, MCAS and other MCADs, POTS or other forms of dysautonomia, gastroparesis, IBS, Chiari, CCI and other cranio-cervical junction disorders, migraine, degenerative disc disease and related disorders, arthritis, costochondritis, and so much more we could spend all day listing them. Here are a few more reasons we opened our shop:

  1. To provide products that raise awareness and help build a sense of community in ways unique to a variety of personalities and that are reflective of the times and spoonie life. It’s our mission to make EDS and all of its comorbid conditions well known across the world and these products help us serve that mission both literally and figuratively.
  2. To display and sell some of the wonderful items we’ve found that truly help with some of our most difficult to solve symptoms. While we could just continue to act as an affiliate for some of the products we’ll be adding, this means the Zebra Pit gets a little more of the cut and has more control over what we can do with those funds.
  3. So we can support the organizations that are making the biggest impact on these conditions. [UPDATE: 11/20/19] We planned on doing a dedicated retail giving program, but as it turns out, several states require you to register to do so. The cost to do so is in upwards of $10K! Obviously, that isn’t possible. We will definitely still be supporting the charities that matter to us, but we cannot do it by donating a percentage of our proceeds at this time due to legal/financial constraints. This won’t stop us from giving, but it will stop us from advertising it and allowing you to designate a specific program.
  4. So we can better support the community we serve by getting the best prices possible and ensuring you always have a place to get the things you need to help you achieve your best health. Whether it’s a product we’re recommending or a post about promising therapy techniques, you know it’s all vetted by people who share these conditions, Understand how it works and whether it needs to be modified. We always want you to check with your doctor before taking any of our advice, but it can be reassuring to know that something works for similar people before investing the money on it.

Want to be notified about new products, posts and happenings at the Pit? Subscribe to our Mailing List!

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Shop Goals

In addition to the plan to add on as many of our recommended health and wellness products, we have several goals we hope to attain as we grow:

  1. Adjust pricing as we grow. We may not get the bigger discounts to begin with, but as we grow and they come along, rest assured the Zebra Pit will be sharing any decreases we see with our community. We understand the financial toll of chronic illness because we also live with chronic illness.
  2. To provide a comprehensive specialty shop exclusively for spoonies and medical zebras that include supplements, therapy devices, health and fitness gear, a whole slew of over-the-counter remedies, CBD products, books both informational and entertaining, self care and personal care products, mobility devices, and more.
  3. To provide products which are ideal for most people with sensitivities to use. For example, while I couldn’t find tagless shirts for our printed products, everything we’ve selected has tear away tags for easy removal so those of us living with any level of sensory overload can feel good in our clothing.
  4. To work toward creating and offering some of our own products.
  5. To source our products as ethically as possible.
  6. To support our community and customers by implementing fair practices and providing good quality products.
You've relied on us for years for innovative and accurate health and wellness information for EDS, MCAS, POTS, Fibromyalgia, ME/CFS and more. Now we have a shop! Learn what it's all about, how we plan on growing our products and why we decided to start with a line of our own especially branded products perfect to help you raise awareness the way you choose!

Shop with Confidence

  1. In regards to our awareness products, if the item you receive arrives damaged or is not printed perfectly, you simply need to send us a photo and we’ll send you a replacement that’s printed just for you.
  2. If your order isn’t right, we’ll do our best to make it right as quickly as possible.
  3. If you’re unsatisfied with your purchase, ordered the wrong item or size, you can return it to us for a refund of the product price or exchange within 30 days, provided it’s returned in brand new condition.
  4. As we grow, these policies may change, but our commitment to quality will always remain. To view our shipping and return policies, click here: Shipping and Return Policy.

Other Changes Around the Pit

I’m sure you’ve noticed that our menus and structure has changed recently to accommodate our store. We like our new design quite well, but it may take some a bit of time to get used to it. Here are a few tips that may help:

  • Our Shop is located at https://zebrapit.com/shop. This URL may be used if you prefer to bypass the opening screen.
  • Our Blog is located at https://zebrapit.com/blog and works just like the one above.
  • Our Blog page looks quite different, but it now has 3 different ways you can view our posts. My hope is that it offers something to suit every browser.
    • The first is a 20 post carousel that shows the featured image, title, date and brief description. It always begins with the most recent post.
    • The second section is an image catalog of our sections, so you can view posts by subject.
    • Finally, our last 100 posts are listed at the bottom so you can scroll through them much like our old page, but they only include titles, dates and descriptions.
  • Finally, we have everything arranged in convenient drop down menus in our header (the upper purple section) you can access both on a computer or smart phone. To go to the blog, simply click the word “blog.” To visit a specific section page, choose it from the drop down menu.
  • Search Boxes: As always, we have a search box near the top of the side menu so you can search for anything you may be looking for. If it’s an item from the shop you seek, use the search box in the purple header instead.

Now finally…. the news you’ve waited so patiently for…..

Now that we’re done with the boring stuff, why not take a tour of our shop? Be sure to take this code with you:

ZPgrand25

The code is good for 25% off your entire purchase on anything in our shop. Want to shop more than once? Use it as many times as you’d like! The best part? While everyone else is having “Black Friday,” “Small Business Saturday,” or “Cyber Monday,” sales, our grand opening sale will last two weeks! From today through Sunday, December 1, 2019.

Can’t afford to shop right now? If you reside in the U.S. you can enter to win 1 of 3 prizes in our Name Our Mascot Contest between now and November 25, 2019.

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Meet Our New Mascot & Win!!

As you may have noticed from the construction dust –sorry about that, by the way– the Zebra Pit is getting a makeover and we have so much exciting news to impart, I’m not sure where to start! The most logical place seems to start with the possibility of FREE SWAG! You could win 1 of 3 prizes if you enter our Name Our Mascot giveaway! To enter and win an awareness product from our brand new store and more, just read on! You can enter directly on this page!

We weren’t planning on opening our store until the new year. However, when I contacted the graphic designer who I just knew would create the perfect mascot for the Pit, she was able to start working on her right away and was done in almost no time at all! It felt like kismet, so I decided to go ahead and start designing some cute awareness products and work on getting our store up and running in time for the holidays!

The store isn’t open yet, but I’m far enough along in the process that I wanted to go ahead and kick everything off with a contest to get things underway and give you a sneak peek of the few things you’ll soon see in our shop. These items will accompany the same news, information, essays and health and wellness information you’ve come to love and expect from the Pit. We aren’t changing, we’re growing! We’re excited to roll out a few of our new awareness products, of which 5% of the proceeds will go to one of 3 charities, chosen by the purchaser, but more on that later. In addition, we’ll be adding health and wellness products in the future. The shop won’t open until this weekend (fates willing), but to kick off our new shop, get our mailing list going and to unveil the ultimate cuteness in zebra stripes, WE JUST HAD TO DO A CONTEST!!

The Zebra Pit is going through so many changes, including the introduction of a shiny new mascot ready to raise awareness for you and your spoonie condition or rare chronic illness! For a limited time, help us out by choosing her name and you could win 1 of 3 prizes! Hurry. The contest ends soon!

Without Further Ado, I give you the zebra of the hour:

Meet the Zebra Pit's newest member; our exclusive mascot made by Ogrefairy to help us raise awareness! Our Mascot is already busy raising awareness, but she needs a name! Will you help us name her?
The New Zebra Pit Mascot Created by Michaela Oteri (Ogrefairy).

Isn’t she a looker? You can tell she wears her stripes with pride!

But… what’s her name??

We’ve come up with some great names for our newest member, but we just can’t make up our minds! Won’t you help us decide? Contest entry and details are coming soon. But first, Let’s learn more about our mascot, shall we?

The Zebra Pit is going through so many changes, including the introduction of a shiny new mascot ready to raise awareness for you and your spoonie condition or rare chronic illness! For a limited time, help us out by choosing her name and you could win 1 of 3 prizes! Hurry. The contest ends soon!

A Day in the Life…

Our Mascot, let’s just call her ZPM (Zebra Pit Mascot) for now, is one busy medical zebra. First, she works tirelessly to raise awareness for rare disease patients everywhere by reminding doctors and the world at large that they simply can’t ignore the zebras among the horses. You see, there’s an age old adage doctors are still taught in medical schools today, “When you hear hoof beats, think horses, not zebras.” In other words, look for the most common and likely cause for a patient’s symptoms. Well, it turns out that this attitude can contribute to the delay of the proper diagnosis of individuals with rare disease. In fact, it took me 19 years of complaints and pleas to doctors to figure out what I had before I was finally given a proper diagnosis or hEDS at the age of 45. I say 19 years, because that’s when my illness became undeniable. I had symptoms even as a child. I’m not alone. The average time to diagnosis for rare patients is around 14 years. ZPM has a big job to do so we can shorten the time of diagnosis for rare patients like herself across the globe.

When ZPM isn’t raising awareness, she’s busy living the spoonie life as a hypermobile zebra with Ehlers-Danlos Syndrome. Though she’s really passionate about raising awareness of all rare diseases, ZPM has to take time off for ample rest, self care, therapies, and medical appointments! So many medical appointments! Trying to keep up with her hectic life despite always being short on spoons isn’t easy. When ZPM leaves the house, she must do so with a satchel full of medical supplies and her trusty smart crutches to help support her deteriorating joints.

Meet the Zebra Pit's newest member; our exclusive mascot made by Ogrefairy to help us raise awareness! Our Mascot is already busy raising awareness, but she needs a name! Will you help us name her?

ZPM couldn’t be more grateful for the mobility devices that keep her safe despite her wobbly gate caused by poor proprioception, repeatedly damaged joints and osteoarthritis, all caused by her weak collagen. Still, it can be exhausting and painful work for ZPM to hobble around on crutches for very long. It can really hurt her neck and shoulder and sometimes even her spine. She needs long breaks in between and sometimes uses a wheelchair for longer trips.

Of course every medical zebra needs to have more to their lives than medical appointments, raising awareness and a little self care. That would be like dining on the same prairie grass for every meal for the rest of her life. No, she needs some leisure time and ways to de-stress! Lucky for her, she LOVES to paint and craft!

Meet the Zebra Pit's newest member; our exclusive mascot made by Ogrefairy to help us raise awareness! Our Mascot is already busy raising awareness, but she needs a name! Will you help us name her?

She also loves cosplay! Are you feeling her vibe? Looks like she’s ready to paint some fluffy little clouds and happy trees! Just as soon as someone chooses her name! Watch out! You never know what ZPM will be getting into next. She may be chronically ill, but she’s still got a big zest for life! She loves to read, get out and enjoy nature on good days, do a little shopping and spend time with her friends and family.

Special thanks to Michaela Oteri for helping me to make our mascot a reality and lending her own little touches that make ZPM so special. As a fellow zebra with EDS and ME/CFS (among others) and her ever faithful community spirit, I just knew she would mold for us the perfect mascot. I just knew in my bones she was the perfect person to help me the fulfill my vision for our mascot. We’re also dedicated to working with others with chronic illness and will continue to seek out disabled professionals for the services we seek.

I don’t really want to get into the store at the moment, but know that I will definitely put out more information and get it up and running as quickly as I possibly can. I’m working as hard as my spoon bank will allow to get this all pulled together before Thanksgiving, but I think we’ll be open for business well before then. Of course, in the meantime, I hope you continue to enjoy our blog and SIGN UP FOR OUR CONTEST!! Are you ready??

The Zebra Pit is going through so many changes, including the introduction of a shiny new mascot ready to raise awareness for you and your spoonie condition or rare chronic illness! For a limited time, help us out by choosing her name and you could win 1 of 3 prizes! Hurry. The contest ends soon!

Name Our Mascot!

Finally, the details you’ve been waiting for! Thanks for being a good sport and hanging in there with me. The Zebra Pit has run a few small contests previously, but nothing quite like this. For this contest, we have 3 amazing prizes! In fact, each winner gets 2 prizes as described below.

Our third place prize comes from our new shop and will help keep our third place winner warm this winter by keeping your well supplied with your favorite hot beverage, be it coffee, tea or hot chocolate: One 15 ounce ceramic mug with the winner’s choice of these available designs:

Our second place prize comes from Warrior Life Planner! This planner is packed with everything anyone with a medical condition would need to track in 2020, including mental health check-ins, med tracking, symptom and energy tracking and so much more. This prize is valued at $14.99 and has a slight margin error that won’t affect use or legibility. For more information about this prize, visit the Warrior Life Planner website.

For a limited time, win a Warrior Life Planner in our Name Our Mascot contest! Visit zebrapit.com for more details.

Our First Place Grand Prize winner will be getting the conversation started about their or their loved one’s rare condition with a choice of one t-shirt OR one sweatshirt from our brand new store! This prize is valued between $24.99-$54.99 depending on the size and style chosen. These are our available shirt styles. All four styles are available with your choice of any of the 3 mascot images and sizes range from S-5x:

As a bonus, every winner will receive their choice of kiss cut sticker (2″ or 4″) OR button from our brand new shop so they can raise awareness regardless of the prize they choose! Each winner can choose one sticker or button with one design; Zebra Warrior on smart crutches, Creative Zebra, Fitness Zebra (pin only), or a Cripple Punk symbol. This prize is valued between $2.99-6.99.

To enter, follow these rules:

  1. Enter and submit your Information in the form below. Be sure to fill it out completely.
  2. For one additional entry, follow us on social media (Facebook, Twitter, Instagram or YouTube Only)
  3. Entries are open to people residing in the US only for this contest. Sorry!
  4. A maximum of two entries per household are allowed.
  5. Prize values are approximate and may be substituted with a prize in the same price range if item is no longer available.
  6. Contestants have 15 days from the announcement date to claim their prize.
  7. The Name Our Mascot Contest closes at Midnight Eastern on November 25, 2019.
  8. Winners will be chosen at random by computer and announced on The Zebra Pit Blog November 26, 2019 by 6 pm Eastern.
As of 11/17/19, Zena, Warrior Spoonie and Ehlie are neck and neck for the lead. Want to shake things up? Vote for a write in!

By Clicking Submit, you agree to the official rules (stated below) of the “Name Our Mascot,” contest and inclusion on our mailing list. We never sell your name! For more information, visit our privacy policy.

We look forward to receiving your entries and announcing our winners on November 26!

Ps. If you don’t qualify for the contest, but still want to provide input on your favorite name, please let us know in the comments or fill out the form and mention that you aren’t in the US and I’ll keep track of those to pick the most popular name! I can’t offer prizes globally, but I would love to have everyone’s input on their favorite name. I’m so sad I couldn’t include everyone on this one, but I had to keep it to the US for budgetary considerations. xx

The Zebra Pit is going through so many changes, including the introduction of a shiny new mascot ready to raise awareness for you and your spoonie condition or rare chronic illness! For a limited time, help us out by choosing her name and you could win 1 of 3 prizes! Hurry. The contest ends soon!
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Guest Post: Making It As a Spoonie Girl Boss

It’s been a while since the Zebra Pit has added to our Disability and Work series. I enlisted the help of spoonie entrepreneur, graphic designer and blogger Kirsten, who owns Graphic Organic and works as a freelance graphic designer. Kirsten was kind enough to lay out a few of the things she found instrumental to building her business and discusses a little about how she manages the needs and constraints of her chronic illness with her work. Please help offer Kirsten a warm Zebra Pit welcome. I hope you enjoy her invaluable advice as much as I!

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Are you chronically ill and looking for ways to work from home? Did you have to give up your full-time job? Are you good at a specific skill? Do you have a lot of knowledge about a certain topic? Sounds familiar? Then keep on reading…

I’ve been running my business Graphic Organic for two years now. Graphic Organic is an online store with my own designs on sustainable clothing and stationery. I’m also a freelance graphic designer and I love writing articles for my blog.

I’m not an expert whatsoever, nor am I able to fully make a living with my business. I don’t have the secret ingredient for becoming a success overnight. I started out knowing nothing about the entrepreneur life. Graphic Organic is slowly growing every single day and so am I as a girl boss. I’m here to share my story of how I started my business and things I’ve learned so far.

1. No matter how much you prepare you’re never ready, but it does help.

You will learn most things along the way. Even the most successful business person will tell you they find out new things every day. Owning a brand has its risks, no matter how good you prepare, you’ll realize soon you can’t control everything.

Nonetheless, I’m glad I did go to a business course before opening. I didn’t have many people close to me that are entrepreneurs and I had no idea where to begin.

In business class we studied the basics of marketing, insurances, laws, how to make an invoice, taxes, etc. I know some people make it seem “easy” online to start as an entrepreneur but a lot of them are technically doing things against the law. This doesn’t have to lead to serious problems now but it’s important to know your rights, especially as your company grows.

2. Invest, volunteer and support.

Kirsten spending time with a beloved companion.

In order to grow your brand you have to be very passionate, otherwise you will give up in an early stage. Believe me, there have been multiple times when I wanted to just stop because I was so tired of working for free.

Every little money you earn goes needs to be reinvested into your business. Whether that is paying your suppliers, materials you need or your accountant. Advertising and promoting your business is not only hard work but also expensive. Running a business is so much more than the service or products you offer.

I know it sometimes feels like you are constantly giving and not receiving. Money will come into your life but you have to be patient.

Doing volunteer graphic design jobs have payed me in experience and more work to put on my portfolio. Thanks to the work I did for free, a client reached out to me because they liked my style.

Giving away products made people talk about my brand and therefore I gained new traffic to the site who subscribed to the newsletter or follow me on social media, which attracted them later on to actually purchase something.

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Another thing I noticed is supporting fellow entrepreneurs in your niche is so important. You know about yourself how many hours of work you put into your project, a super quick and easy thing to do is simply let someone know they’re doing a great job. Think about how it makes you feel when you get a compliment. Feels good right?

Why would you go to a supermarket with four floors for jam when your neighbour makes it themselves in a local establishment? If you don’t have money to spend now, you can easily support by just telling people about it, hang up a flyer, share on social media or a simple thumbs up and a nice comment help to gain followers.

Try to look at your business as something unique, even if people try to copy it, they can never be YOU. There is a place for everyone. Don’t look at it as much as a competition but a positive look and genuine support can help you a lot further.

3. Your health stays a priority.

Last but not least, your health should always be your first priority. My chronic illness is not going on a holiday when I’m in working mode. The chronic pain and fatigue is always with me. Even though we all know it can be so nice to just focus on something else and forget about being ill, it can be toxic too if you put self care at the bottom of your to-do list.

The freelance work I did has always been for someone who understands my health issues. They know that I have a slower pace than the average graphic designer and that sometimes I’m stuck in bed and it’s possible appointments have to be rescheduled. Strict deadlines are a no go for me.

This makes it a lot harder to find clients but I think it’s important to not promise anything you cannot realize.

When I receive an order, I give myself 1-3 business days to package the product(s) and bring the parcel(s) to the post office. That way I’m not getting stressed out when I’m having a flare.

I know all too well what it’s like feeling trapped in your body and wanting to do things because you feel so inspired but you can’t. “You can’t pour from an empty cup”. I’m working hard on planning in rest, just as I plan in work and activities.

I make mistakes and I’m gonna keep making them. But I’m growing as a business woman and as an individual too. Remember that taking care of yourself is a skill just as much as making jam is. 😉

Do you have a business yourself? Are you thinking of starting one? Let me know in the comments!


Kirsten is a graphic designer, blogger and the founder of Graphic Organic. She’s 23 years old and lives with fibromyalgia and M.E. To learn more about Kirsten, visit her website: https://www.graphic-organic.com

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MCAS, Fertility & Pregnancy

This might be one of the shortest posts in history. I can find “infertility and endometriosis” listed just about everywhere for mast cell activation syndrome (MCAS) patients in online descriptions provided by doctors, scientists and other experts: However, I can’t find a single study that has worked to discover why infertility is an issue in MCAS and only a few studies or articles that discuss pregnancy, mostly for mastocytosis. Effectively, I could end the discussion right there, because everything else I write will largely be speculation. Of course, you know me. I can’t help but speculate, at least a little.

What could be the cause of infertility in women with MCAS? Does it have something to do with the scar tissue they found during my hysterectomy or are hormones at play? With mast cell activation disorders, it could be a few things at play.

Since getting endometriosis only happens to some women with MCAS and some without, as mentioned in my post Menstrual Related Symptoms and MCAS, I doubt the key lies there. I’m the perfect example of infertility related to MCAS and endometriosis was not part of the equation. One would think that when a surgeon has to excise several pounds of scar tissue during a total hysterectomy that endometriosis was a foregone conclusion .No one was more surprised than me when dozens of biopsies revealed there was no endometrial tissue to be found outside my uterus.

Was it the scar tissue that prevented me from conceiving? It isn’t likely, given that a hysterselpingogram revealed my fallopian tubes were open. I even showed plenty of evidence of proper egg formation and release, but they still labeled me with polycystic ovarian syndrome (PCOS) despite the total lack of evidence. I released eggs normally, there was no sign of ovarian cysts or multiple egg maturation and yet, I couldn’t conceive.

Could the key be in my PMDD and the severe mood swings I experienced like clockwork every month? These mood swings were likely indicative of wild hormonal swings, likely spurred on by my misbehaving mast cells. Personally, I feel its key to my own infertility. I have all the signs of some sort of metabolic dysfunction, but like many women with MCAS, these fluctuations happen so rapidly, it’s difficult to pin them down on tests. Not surprisingly, every time my TSH and T2-4 levels are checked, they vary greatly, but are somehow still in range. Of course if you’ve been in this game long enough, you begin to understand that while these ranges are ideal for healthy people, an individual with chronic illness can be affected greatly by slight variations in any and all levels of hormones and nutrients in the body. There really is no one size fits all when it comes to medicine.

I suppose if I were doing things over again, I would have pressed harder for my metabolic dysfunction to be taken seriously. I would have done an exploratory to see whether or not I actually had endometriosis, but this option was never offered to me, even if it was a possibility at the time. Had mast cell activation syndrome had been recognized as a real condition when I was still a young woman, who knows, maybe I’d have the child I always wanted.

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All I can offer to women who are struggling with conceiving is hope. Hope that your complaints will be heard. Hope that your MCAD will be discovered and treated before your biological clock runs out or you resort to a hysterectomy to escape month long periods, severe pain and your part-time personality, Mr. Hyde. Don’t stop searching for answers. Don’t stop asking the important questions. Try mast cell stabilizers and antihistamines and everything else that works to avoid these unnatural hormonal fluctuations.

To be perfectly frank, I’m opting not to write about my pregnancy findings, which is half because there’s so little to offer and half because pregnancy isn’t something I’m really prepared to write about. However, I leave you with the research I did find, so you can explore these subjects on your own.

  1. Almudena Matito, MD, PhD. TMS for a Cure. “Mastocytosis and Pregnancy.” Accessed Oct 22, 2019.
  2. Kumaraswami, Sangeeta. “Management of a Parturient with Mast Cell Activation Syndrome: An Anesthesiologist’s Experience.” Case Reports in Anesthesiology. Volume 2018, Article ID 8920921. https://doi.org/10.1155/2018/8920921. Accessed Oct 22, 2019.
  3. Woidacki, Katja et al. “Mast cell-mediated and associated disorders in pregnancy: a risky game with an uncertain outcome?.” Frontiers in immunology vol. 5 231. 19 May. 2014, doi:10.3389/fimmu.2014.00231 Accessed Oct 22, 2019.

We learned a lot in this series about known menstrual symptoms associated with MCAS, but unfortunately, it seems to be the end of the line for our discussion on female reproductive issues arising from MCAS at this time. We need more information and I hope in time, we will see doctors studying the role MCAS plays in infertility.

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Dental Issues Prevalent in EDS and HSD

We all want to have a smile as dazzling as our diagnoses (bah-duh-dum), but there are a number of dental issues that are common to people with Hypermobility Spectrum Disorders (HSD) and the Ehlers-Danlos Syndromes (EDS) that could make a great smile a short-lived treasure. Problems with collagen spell trouble for our teeth and their home, the jaw. Today we’ll cover the most common problems.

Periodontal Disease (gum disease, gingivitis and periodontitis) is an early onset condition for people with Ehlers-Danlos Syndome and Hypermobility Spectrum Disorders. Learn what you can do to prevent and manage gum disease, along with information on other common dental problems in this series on EDS and Dental Care.

Future posts will cover going beyond the basic dental care guidelines for bendy zebras and some recommendations for improving gum health from massage to specialized toothpastes and rarely known dental tools so you can keep your teeth looking a little better than Gladys’:

“Oh, Gladys. Just look at this mouth!”

Don’t have EDS or HSD? Take a look at our post Dental Care and Chronic Illness for a wide range of tips for other conditions.

Oral and mandibular issues are commonly reported by EDS patients of all types. Collagen defects can compromise oral health including, bone, teeth, gum tissue, nerve tissue, tendons and ligaments that help to hold our teeth in place, as well as our jaw. Poor dental outcomes can affect pain levels, functionality, nutrition and over all quality of life.

Bone Structure and Dentition

Tooth mobility is a common issue for many people with EDS and HSD and is thought to be related to the periodontal ligament, which has the sole job of holding each tooth in place. Several tooth abnormalities have been noted among EDS zebras. Posterior teeth are reported to have high cusps and deep fissures, making them difficult to clean and care for. The roots may also be shaped abnormally, elongated or fused. Pulp stones ( discrete calcifications that form within the pulp chamber) are seen in some. Congenital absence of teeth and microdontia (in which one or more teeth appear smaller than normal) have also been described in people with EDS.

Soft Tissue Abnormalities

The soft tissues of the mouth are particularly delicate and the oral mucosa can be particularly fragile. Mouth sores may be frequent for some with hypermobility. It is common for these tissues to be damaged with dental tools. We are also prone to early onset gum disease, which affects both soft tissues and eventually bone.

Early Onset Gum Disease

Since collagen is a component of teeth and gums, they can show the same weaknesses as any other collagen containing substance in our bodies. This is further complicated by the ligaments that hold our teeth in place, known as the periodontal ligament. Because of our collagen deficiency, ligaments can begin to stretch and fail over time, causing our teeth to become hypermobile, trapping more food in the gum line, creating the bacteria that leads to inflammation, gum loss and tooth decay.

If these issues aren’t enough to cause the beginnings of gum disease, it is believed that the structural defects in collagen or collagen-related proteins which are part of the immune system can increase susceptibility to degradation by bacterial pathogens. Given that the mouth is the perfect environment for bacteria, we’re often fighting a losing battle from the start.

People with hypermobility also tend to have poor blood flow and gums can easily become oxygen and nutrient deprived, adding to issues with the health of these tissues. I believe this also plays a role in numbing issues found in EDS, so I’ll discuss it in more detail when I talk more about gum massage and other therapies I’ve had success with, but it’s important to note that it can contribute to poor gum health.

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Gum disease develops slowly over time and it’s common for EDSers to get early onset periodontal disease, which usually begins with gingivitis. Gingivitis is inflammation of the gums (gingiva) signaling early gum disease and is caused by a build up of plaque along the gum line, trapping bacteria and creating the perfect breeding grounds for infection.

Gingivitis is often a precursor for periodontal disease. In periodontitis, infection advances in the gums and spreads through the periodontal ligament and alveolar bone (the bony ridge containing tooth sockets), eating away at these structures and causing receding gums, bone loss, and even greater hypermobility of the teeth.

Temporomandibular Joint Dysfunction

Credit: Wikipedia Commons

The temporomandibular joint is very complex. It is best described as a sliding ball and socket joint worked by a series of muscles for chewing and talking. Because this complex network can affect the surrounding tissues, it’s important that the whole head and neck be examined and treated for TMD. In several studies, TMJ hypermobility and TMD have been linked to systemic joint hypermobility.

TMJ dislocation is noted to occur more often in women in the general population which mirrors that of EDS. The TMJ can relocate once hyperextended but cause the cartilaginous disc to stay dislocated resulting in pain, bony destruction, and limited mobility. The muscles of mastication can be overused, spasm, and cause referred face, head, and neck pain thus resulting in decrease functionality and quality of life.

In a recent study of 114 EDS patients comprising several types with an equal number of controls, a higher proportion of the EDS patients experi-enced hypermobile joints during extreme mouth opening, poor mouth opening ability when biting into thick food, clicking, crepitation, and permanent locking of the jaw open and closed. Many of the EDS patents reported decreased hypermobility of the joint with age.

Mitakides and Tinkle

Though these problems sometimes feel as insurmountable as Mt. Everest, there are things we can do to improve and even prevent these problems before they get started. In our next post, we’ll talk about several tactics that may help with these issues, including products I’ve found to help me keep my wins bigger than my losses in the fight against gum disease and TMD.

All joking aside, periodontal disease (gum disease, gingivitis and periodontitis) is an early onset condition for people with Ehlers-Danlos Syndome and Hypermobility Spectrum Disorders. Learn what you can do to prevent and manage gum disease, along with information on other common dental problems in this series on EDS and Dental Care.

There’s still a lot to cover regarding proper dental care and the prevention of common problems for people with hypermobility. My next post on oral care will cover what our basic dental care should cover and some great tools, special toothpastes and rinses. Then we’ll move onto issues of numbness and of course, TMD. I hope you join us!

In the meantime, what kind of dental problems are you experiencing? What are some of the best tools you’ve found that help? Let us know in the comments and I might include it in one of our future posts!

Resources and Further Reading