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Not EDS but HPP

Alright. After finally finding a doctor who would chase my symptoms to a diagnosis, I got genetic screening and it turns out I have Hypophosphatasia (HPP).

Anyone else?

I was honestly upset that my diagnosis wasn’t EDS because there’s a community. This is so rare in adults apparently, but I thought that might not actually be the case.


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What's something you wish you could tell others about your experience with gastroparesis?

Living with gastroparesis presents a unique set of challenges that can be hard to describe to those who don’t have experience with the disorder. From the outside, it may look like we’re picky eaters or we’re antisocial when we turn down dinner invitations, but, on the inside, we know we’re dealing with a difficult-to-manage condition that has the power to overwhelm us on a daily basis.

I wish I could express to others just how painful gastroparesis can be and the medications and precautions I have to take to be able to digest food. I also want people to understand that I’m not being rude or “watching my figure” when I ask for a to-go container, I just can’t keep forcing food down, especially when the people I care about glare at me impatiently as I take small bites and thoroughly chew everything.

So, fellow Mighties with gastroparesis, I want to know what you wish you could tell others about living with gastroparesis. You don’t have to sugarcoat anything here.

#Gastroparesis #EhlersDanlosSyndrome #Diabetes #Neuropathy #TheBendyBunch #GP #EDS #underactivethyroid #Hypothyroidism #CheckInWithMe

4 reactions 8 comments

Four White Walls and Spoonie Things

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain

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My Sensitive Skin Friends, I Need Your Advice!

I've been struggling with acne and extraordinarily dry and sensitive skin for as long as I can remember. I feel like I've tried every treatment, cream, and dermatologist's suggestion in the book, but nothing has made me feel confident in my skin. As I'm sure all too many of you know firsthand, having EDS can make our skin pretty difficult to deal with. I'm tired of the trial and error, only to have allergic reactions and rashes appear due to an ingredient in a product (I'm looking at you, hyaluronic acid).

So, my stretchy and sensitive-skinned friends, I'm turning to you:

✨What is your favorite way to care for your skin?

✨What routines and products have worked for you?

I'm looking forward to reading your suggestions!

#EhlersDanlosSyndrome #CheckInWithMe #TheBendyBunch #HSD #Rosacea #Psoriasis #Acne #Eczema #Dermatitis

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Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.

So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.

Your answer may be used in a Mighty story!

#RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache

8 reactions 13 comments
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No idea I had EDS

(Im the girl with have the grey shirt on) I had no clue I had EDS till last year and this picture was 11 years ago. #EDSHT #TheBendyBunch

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Surgery & EDS 🤔 What’s your take?

I’ve had a multitude of surgeries to repair the damage caused by the 100s and 100s of dislocations I’ve experienced over the course of my lifetime. I read somewhere a while back that surgery was actually not as successful for EDS patients due to it being a genetic condition (which seems to be my experience with repeat surgeries or post-op complications).

👉 So here are my questions for you bendy folks:

• How have your surgical experiences been?
• Have you had success with surgery?
• Have you had more complications post-op?
• How has your ortho team navigated EDS-related complications?

Thank in advance for sharing your perspective! 🙏

#EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #TheBendyBunch #RareDisease #ConnectiveTissueDisorder #Surgery

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What joints give you the most trouble? (i.e. pain, subluxations/dislocations)

For me, it’s my shoulders and knees. I’ve had a few surgeries on both to repair damage from dislocations. AND fun fact: I now have a new knee and tibia in my left leg. What about you, bendy crew? 🦓

#TheBendyBunch #EhlersDanlosSyndrome #ChronicIllness #ChronicPain #HypermobileTypeEDS #HypermobileType