The Worst Symptoms of Ehlers Danlos Syndrome || EDS Awareness Month 2021

it's that time of year again! EDS & HSD awareness month comes around quick! I'm back for my 5th annual series of Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder Awareness Month videos with my dazzle of zebras from across the world. This year we have 27 zebras with 4 different types of EDS and HSD from 8 different countries sharing their experiences of what it's like to live with these rarely understood conditions on a daily basis.

This is the first video in the 2021 series and we are talking about the worst symptoms of HSD, hEDS, cEDS & vEDS. From chronic pain and fatigue to dislocations there are huge lists of symptoms around but I want you to hear from people living with EDS on a daily basis what the worst symptoms they face are.

This video is dedicated in loving memory of Saarah Ahmed who wanted to take part in this series but sadly passed away before she could. Saarah lived with a very rare type of EDS called kyphoscoliotic EDS and she always wanted to raise awareness. Her family want her legacy to live on so please visit the links below to learn more about Saarah & her advocacy work.

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Huge Thanks to Everyone who was involved in this video:

Adriana, North California, USA,18, hEDS, IG: @adrianaedswarrior

Alyssa Maryland, USA, hEDS, IG: @spoonfullygraceful

Amber, Gloucester, UK, 18, HSD, They/Them, IG: @_prisma_art_

Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: @AyeshaShaSha

Bradley, Victoria, Australia, 29, vEDS, he/him, IG: @veds_zebra

Caroline, Essex, UK, 35, hEDS, IG: @lilcaz10

Clara, Texas, USA, 21, hEDS, IG: @clara_and_arlo

Eleanor, Scotland, 22, hEDS

Eliza, London, UK, 24, hEDS, They/them, IG: @disabled_eliza

Georgia, Cardiff, 22, heds, she/her

Jasper, Newcastle, UK, 26, hEDS, He/him Twitter: @queercanthear

Jeannie Di Bon, London, UK, hEDS IG: @jeannie_di

Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni

Jill, The Netherlands, 27, hEDS IG: @jillhubersmooren

Kate, Northumberland, UK, 26, hEDS, IG: @katestanforth

Katya, London, UK, 26, hEDS, IG: @positivelychronictravels

Rachel, Essex, UK, 25, hEDS, IG: @racheleanneblog

Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot

Special Thanks to my amazing boyfriend Ian for helping with editing!

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[rebeccalaura]

Thanks for sharing this! There's a huge lack of awareness for EDS and HSD. I recently got a sarcastic "oh, poor you" from an older colleague who recently hurt her foot when I was having a pain flare up causing problems to climb down the stairs (i have HSD) have told her before about it, but it's as if problems related to connective tissue are ignored or dismissed by others cause they don't understand it.

[jtrentful]

I lost my brother last year to ellerslie danlos for 3 years he got thinner and thinner he had really bad pain in his stomache he always used heating pads for the pain he also couldn't eat anything without puking it back up by the time the doctors knew what it was he was already dying from organ failure the collegen that connects his tissues fell apart which made his organs dissolve they patched his intestines 3 different times but last time they ripped open the doctor went to open him back up only to see that the staples used to close his surgical wound didnt work his stomach fell open his body refused to heal he had less than 20ft of intestines when he died it also effected his brain for last 2 years he was always in a rage or very sad like it was also earing his brain nobody would help him because of his random mood swings except for me I always tried I had to watch him die suffering he lived 4 days longer than he should have my only positive outcome in all of this is knowing he believed in Jesus and went to heaven his last word was wow as he had the look of amazement on his face I know he was seeing heaven and I know he doesn't have to suffer anymore thank you God for keeping him!

[Rjbforher]

I just saw this, my daughter is 16, and has hEDS. This made me cry, seeing other people who k own and understand what she's going through. All we have now are many Dr's who treat her symptoms separately. She always in so much pain. Keep going with this channel. Make it big! All need to know.

[Dulcimerist]

Fatigue is my worst symptom. Historically, the dysautonomia/POTS had been the most debilitating, and was the first sign of my EDS. However, my EDS specialist has managed to get my dysautonomia/POTS and digestive motility issues under control with Mestinon - an old medication which has become a miracle pill for many EDS patients. Treating POTS and gastroparesis with a single medication is efficient, but not all EDS patients are helped by it since we're all different.

[princeloup]

thank you. it s so nice of you to have integrated some fellow male EDS. It s so rare to see males in this type of videos in general.

[BluetheRaccoon]

"pain on pain"- Thank you for those descriptive words! They are perfect. I've been using "layers of pain", but yours fit even better.

[annettesuterswiss]

The worst for me is that I am often not believed by doctor collegues. Also fatigue, GI issues and progredient muscle weakness.

[ruckuschica]

I have hEDS, and I get the pain and the fatigue. But my worst symptom on top of those things is the anxiety that coomes from not knowing whether my legs or arms will work properly or randomly sublux when walking, or if I'll walk through a cloud of someone's perfume and have a near instant MCAS reaction. It's not knowing how to prepare for each day, because I might feel incredible, or I might not be able to get out of bed.

I fell like my own body is that friend who you can never rely on to give you a straight answer. I feel like I'm in a constant struggle (or confrontation) with my body, and THAT'S draining much of my energy too. I used to have so much confidence, even despite my body being kinda wonky...but now that I'm menopausal and much older, going out to run errands or even simply trying to be social is such a daunting task.

[Voldycat]

Thank you so much for putting this together. I think it's so telling that we're all talking about these awful symptoms like they're nothing, they're our lives every day and just because it's our normal doesn't make it any less awful.

[michelewhite]

For me, the worst symptoms are pain #1 and the emotional pain of medical gaslighting, disbelief or lack of understanding by family and friends. My family (grown kids) are denying the need for genetic testing, and have no patirnce for me when i cannot do things or be the mom i once was. The isolation is awful when your physically fit friends all drift away

[robinhahnsopran]

Thank you so much for including me in this video, and for using your platform to demonstrate the millions of ways EDS can affect people! Happy Awareness Month to all zebras, diagnosed or not, everywhere around the world 🦓 🦓 🦓 🦓 🦓 🦓

[melissafarrugia]

RIP Saarah Thanks given to everyone in this production.

[JayadaRadhikaJPS]

My daughter has a whole host of issues, from joint issues to stomach issues to extremely severe migraines to hyper flexibility to losing the ability to speak due to the extremepain in her throat, the list goes on and on. She was diagnosed with hypermobile Ehlers-Danlos syndrome just a few months back, and the doctor said it was incurable. That was about all the doctor could tell us about it. We have been trying and trying to find out what her other issues are, and watching this video made me realise that it is the hEDS. Thank you from the bottom of my heart. I know it can't be easy to share such personal health issues with complete strangers. I am extremely grateful to you all for sharing and therefore giving me insight into my daughter's hEDS. I was sobbing both for what my daughter (and all of you) is going through and also in gratitude that now we have a way forward.
Any advice, at all, that can be given on how you got it under control, the stomach issues, migraines, etc., would be very gratefully appreciated. My daughter is in hell, and when doctorstry and tell us she is imagining it (because they don't have an answer/haven't heard of hEDS) it infuriates me! They don't live with her and see her day to day. I do. She is so sick and so weak and I am desperately trying to find out how to help her. Please help me save my daughter.

[Fuphyter]

I have had health issues since I was a teen. I fell several times on the ice trying to skate. I had major knee surgery at 19. I am now 64. I was diagnosed with fibromyalgia, babesia and lymes. I've been dealing with chronic pain and exhaustion for decades. Problems in my neck due to foraminal stenosis, spurs and herniations. I have had and still have joint problems. I've had shoulder surgery due to spurs and arthritis (I have a deformity in them). A knee replacement too. I had to go on disability in 2011. I worked full time and it was very hard on me. I had no idea cervical prolapse was a symptom. I had surgery at 38 due to that and a bladder prolapse. I also have huge issues with my digestive system. My daughter was diagnosed with EDS. She is the one who told me I have it. As a kid I could put my thumb against my wrist. It ALL makes sense now. How the many doctors I've seen never diagnosed itis beyond me. Thank you for the awareness and sharing stories.

[mgracie]

My worst symptom of Heds is the care and ridiculous gaslighting from doctors. "You're just depressed" well I am now yeah I'm in debilitating pain everyday and you're just telling me my x-ray and bloods are fine so it's all in my head. 13years of constant doctor appointments and finally got diagnosed at 26

[ROTALOT]

I am autistic and deal with spasms and chronic headache. My full genetic profile revealed my EDS risk as very high. So I probably have it mild or mosaic as in only certain areas of my body.

I quit all vegetables, many fruits, grains, and land animal foods and had severe oxalate dumping for about a year and then my fatigue, spasms, and sulfur sensitivity greatly improved.

I am 64 and live in a van outside of a national and state park to cope, near a coast for the seafood.

Magnesium chloride added to my drinking water and legal THC give me enough relief to enjoy an outdoor life. I retired from teaching so now benefit from lots of solitude.

The ubiquitousness of commercial fragrance has totally destroyed my physical connections with humanity. Shame that. Btw I was vaccine damaged by a later recalled batch for small pox which gave me severe dysautonomia since I was 12.

[erinmarie]

No appetite for me and constant GI issues (gastoparesis).

[vikithomasson]

Ty for putting this video together. I encourage u to include some of us oldies next time too! So many EDSers think we can’t live this long!!

[misscazb]

Thank you for including me on this year EDS & HSD Awareness video! I really feel honoured as spreading awareness really means a lot to me!! Can’t thank you enough for putting this video together!! Spoons & Love 🥄🦓💜

[MikiTheKat...InaHatsometimes]

Thank you much! I believe that I have Heds, and I'm desperately trying to find a doctor to help me with this. This video shows all the things that I go thru. It made me feel finally that I'm not alone, so ❤Thank You Soooo Much!❤ I only have $2 to donate, wish it was more😅