- Видео 7
- Просмотров 8 768
Ehlers-Danlos Syndrome
Великобритания
Добавлен 28 дек 2015
Life with Ehlers-Danlos syndrome (Type III and I features with some family history congruent with EDS IV). This channel contains lifestyle tips, experiences, video diaries, "day in the life" features and so on, with some discussion of medication options for pain and joint bracing methods.
I am a middle-aged academic based in the UK who has EDS - I'm not a medic and i don't give medical advice - but I can and do make suggestions for things you might want to ask your doctor about specifically as they may not ordinarily be thought of, raised or followed up.
I am a middle-aged academic based in the UK who has EDS - I'm not a medic and i don't give medical advice - but I can and do make suggestions for things you might want to ask your doctor about specifically as they may not ordinarily be thought of, raised or followed up.
EDS Files - Episode 5 - Costovertebral joint dislocation
I made this video to show people - medics and family members and friends of people with Ehlers-Danlos syndrome - what often happens behind closed doors. This level of pain is not the stuff my workmates and friends see every day, this is the type of pain I usually am able to hide. I decided I didn't want to hide it so that I could improve the understanding of Ehlers-Danlos particularly by medics who are often dismissive, sadly, about dislocation pain because they are seldom with us when dislocations happen.
Last night whilst playing with my pets, I managed to dislocate 2, possibly 3 of my costovertebral joins. Rib dislocations are really common in Ehlers Danlos syndrome and mine are usually...
Last night whilst playing with my pets, I managed to dislocate 2, possibly 3 of my costovertebral joins. Rib dislocations are really common in Ehlers Danlos syndrome and mine are usually...
Просмотров: 2 242
Видео
EDS Files - Episode 4 - Ehlers-Danlos Medication
Просмотров 1,5 тыс.8 лет назад
I discuss the array of medication, supplements and related products that I use for Ehlers-Danlos and how they help/impact my life. This is not intended to recommend any medication or any one course of treatment above any other or to endorse any particular dose, preparation or manufacturer. It is provided for information only and to explain my own personal Ehlers-Danlos experiences and how I liv...
EDS Files - Episode 3c - Joint braces for Ehlers-Danlos
Просмотров 7858 лет назад
Following on from videos 3a and 3b in this series, this one just shows my compression wear plus my braces for ankles, knees and spine. I don't show wrist, elbow, shoulder or pelvic braces but i do use them.
EDS Files - Episode 3b - Product review: joint braces and sticks
Просмотров 6518 лет назад
The array of bracing i use - which can be found at www.physioroom.com, www.donjoy.co.uk, www.bauerfeind.co.uk and www.djoglobal.com. These are my own views based on my own personal experiences with bracing for management of Ehlers-Danlos syndrome.
EDS Files - Episode 3a - Bracing, Compression Wear, Sticks, Ableism.
Просмотров 4358 лет назад
Part one of a three part episode covering joint bracing for Ehlers-Danlos syndrome based on my own personal presentation of it. I also discuss walking sticks and compression wear and some of the everyday ableism that I and others with EDS face. You may find the following vendors i mention in the video to be of use: www.physioroom.com/ - fantastic supplier of braces and compression-wear in the U...
EDS Files - Episode 2 - Sex and Ehlers-Danlos (for men)
Просмотров 2,3 тыс.8 лет назад
A short video in which I talk about some of the sexual issues that men with Ehlers-Danlos syndrome face. It's fairly frank but suitable for all ages and isn't just for people with EDS - it's for people dating someone with EDS or who want to just educate themselves in case they do meet someone with EDS in the future.
EDS Files - Episode 1. Sex, Relationships and Disability
Просмотров 8988 лет назад
First episode of an ad hoc vlog on life with Ehlers-Danlos syndrome from a UK academic hurtling towards middle-age and living with the effects of this serious illness. These vlogs are provided to share tips/tricks and so on with other patients and their families.
I may reuse some of this in upcoming videos. thanks for doing this!
A friend of mine who got EDS Told me how women he was having sexual expeiences with where often commenting on how nice his skin was and that they where jealous of him becuase of that and that was before he knew EDS Even existed
Is the dislocation physically visible ? I hope youre doing better. I really do.
My knees will hurt for hours if i go into the cold.
Facts.
You have completely opened my eyes on this!
This is excellent.
What country r u in? I'm in Michigan only allowed 2 percocet and now they want to take that and use butrans patch. I'm not addict just dependent an in horrible pain. They have abandoned people like me thanks for the info. Blessings to all who have EDS
Chronic pain sufferers are suffering here in the US!
my mother had the smooth skin ect . but in the first person to truly suffer from it eds
Try no t get on methadone if you can help it.. because if you have a dicter that wants to take you off. the suffering is beyond words
I'm taking methadone and oxycodone.. for eds pain that is unbearable.. I've been taken off valium soma.. and Ambien.. in the last yeae.. it's very hard to sleep. I've been given tizanadine for spasms.. whoa did you just say helps oral thrush?
What have you found to help. I am a male that also has this issue. If I move to much or change positions I lose it almost immediately.
TheoneandonlyDrStar Silicone cockrings work but will leave you very bruised if too tight. Use positions where your body is above it like standing and leaning fwd a bit etc - lying on your back and it just drains lol!
You’re a good resource for those of us with EDS 😉
B D thanks
I Have just done this yawning, I mean yawning of all things!!! It feels like your going to pass out from the pain.
ouch! dislocating ribs is the worst! I want to see the rat!
Sorry taught I share. I'm trying it would rather do that the be in pain medicine the rest of my life
Juan & Annette It won't change anything - the only things you can do that are worthwhile are rigorous physiotherapy, get an orthoticist to manufacture joint braces and yes, pain medication for the rest of your life. EDS is incurable and degenerative: nothing can change that.
Try the cusack protocol
Juan & Annette No thanks, it's complete bullshit. It has no evidence base whatsoever, and is entirely based on pseudoscience and misconceptions of how collagen is formed etc etc. No clinical trials. No evidence base. At best, it has a mild laxative effect that may relieve some of the GI issues but there are cheaper ways to do that. It's not a treatment, it's not a supplement, the components aren't even really digested. As usual, desperate people clutching at straws.
I had to do some googling to understand what it is you're suggesting, and unfortunately there's just no logic to it. Nothing a person can ingest will counteract our body's faulty collagen manufacturing. Eating collagen, or other supplements just can't change that- it's' a degenerative process. I understand the importance of hope and nutrition, and agree that both are very important. What you recommend is really no different than snake oil.
When do you think you will make the next video? I just was told I have EDS and I have loved every one of your videos. They are vary helpful. I know it can be hard to get up and do things you want to, but was just wandering if you will make more and if you ok.
Lunar Wolf Thanks. I only make them in response to something changing/happening that I think others will benefit from. I know more about my genetics now from recent tests and may share that shortly, plus my pain meds have changed and are more effective.
you're mentally super strong
I just want to share a prayer and say May the Lord bless you with some comfort. I don't have this but I cannot even begin to imagine what you must be feeling. May the Lord heal you and take your afflictions. God bless.
Narlee Diaz I appreciate your sentiment but I would rather you didn't pray for me tbh - Christianity is not something I am comfortable with and it goes against my own religious views.
I can respect your views therefore I won't push my beliefs on you whatsoever but I can't deny my prayer, I am sorry. May you get through this with strength and courage.
Hey man I feel ur pain, I have the same thing u do. I dislocated mine 5 years ago by picking up a trash can at a restaurant at closing time and didn't properly lift it. I've been suffering a whole lot since then, is there a surgery that can be performed to fix this condition?
ALEX LUNA No, nothing. It is incurable. 24/7 pain is, at the end of the day, "just" pain. Even on the days I am screaming into a pillow, sweating, passing in and out of consciousness and have to crawl to the bathroom (and it takes 2-3h to move a few metres), it is "just" pain. It won't kill me.
Thanks a lot. I m using almost all these pain medications but i think dose needs to adjust. Good luck to u.
Thank god I'm not the only one. People can be very difficult to deal with particularly on top of everything else we have to deal with already. As awful as it feels at the time, I am at times grateful that if they feel unable to cope with the information I give them they say so up front. Like you mentioned I also use walking aids so its not like I can hide it. Hopefully not everyone out there are as difficult. Thank you for making this video!
You're welcome!
Thanks for posting this, we really do need to talk so much more about sex and disability. I've actually started a blog post series to start opening up space to talk about it and would love to hear your thoughts, comments and additional tips etc! unlockingwords.wordpress.com/2016/06/02/disability-and-sexuality/
Many thanks. I think often the largest barrier sex is people's attitudes towards disabled ppl as being inferior meaning we don't get laid as often ;) It's honestly shocking how many people cancel the first date as soon as hearing someone is disabled - or, if you don't tell them, how they'll make excuses to leave once they see you.
Ehlers-Danlos Syndrome there's a horrible stat from a guardian poll - 44% of people said they'd never had sex with a physically disabled person and probably never would... as you touched on, there's that difficult question of when do you let someone online know you're disabled... it's so disheartening to experience people's prejudices... it is however a good way of getting rid of the wheat from the chaff or whatever. if someone is put off by my disability then i probably don't want to have date them anyway...
You're a brave man for sharing your battle gear with the world. Keep up the good work!
+3075bridget Nothing brave about it tbh - I wear it all the time anyway - though in a weird way I'm more comfortable a friend seeing me naked than seeing my armour-plating ;o)