EDSAUS - Ehlers Danlos Syndrome Support in Australia

Aussie support for those with Ehlers-Danlos Syndrome and their families

This group is for Aussies who have Ehlers-Danlos Syndrome and their families, a place for support, information, compassion and understanding

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I have EDS type 3 hypermobility can i have kids ??

Started by Timothy. Last reply by MBee91 Feb 14. 8 Replies

I am a man and I have been giving this a lot of thought and started wondering if i will be able to have kids and also is there a test to see if i can i would just like to know thanks in advance for…Continue

EDS knowledgeable physios in Brisbane + hip osteoarthritis.

Started by mazinoz Jan 25. 0 Replies

I've been away for a long time - partly NBN and hacker related. However, could someone please help if they know of a physio who truly gets us, or at least is sane and willing to listen and research.…Continue

Sudden flare up of symptoms after a massage

Started by Jane Tilley. Last reply by Sandie "Kat" Lambert Dec 18, 2017. 5 Replies

On Friday evening I had a deep tissue style massage on my shoulds upper back neck and head. It was wonderful and relieved all the knots and pain that had been building since early December. What was…Continue

Ear Pain on descent in pressurised aircraft

Started by Alex Ringrose. Last reply by Broken Dec 17, 2017. 1 Reply

Hi there. My son has the Type 3 EDS and his life style is very good overall. Over the last few years we have noted a change when he flies in pressurised aircraft. He suffers varying degrees of…Continue

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MBee91 replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"No worries darl, and I wish the very best to you too! <3 xoxox"
Feb 14
Zoe replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"Yes, even when I wasn't as sick as I am now.. I think it would have been a huge ask, and really not fair. I have the migraines and pain, and some days it means literally not getting out of bed because you cannot see light.. that's not fair…"
Feb 14
MBee91 replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"Hey Zoe, Please don't be sorry. I completely understand exactly what you are saying. I have read stories of those like myself, yourself and those who have it worse. Yes, I agree there are many more health complications that accompany hEDS. My…"
Feb 14
Zoe replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"I am sorry, MBee91, it's really hard. I understand, completely. I am quite sick, so I know there is no way I could have kids.. but it doesn't mean it doesn't hurt. I spend my time trying to keep ME feed and going to the bathroom OK...…"
Feb 13
Zoe replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"I will just add, that hEDS can be so much more than just muscle-skeletal problems. I didn't know this when I was younger, so much. It can be severe autonomic problems, more than just POTs. My digestive system doesn't work properly. There…"
Feb 13
MBee91 updated their profile
Feb 13
MBee91 replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"Hi Timothy, The choice is purely yours. I completely agree with Zoe as well, as I am a female too. My partner who has RA and me with possible EDS type III / Fibro makes things difficult when it comes to genetics and making our own children if we…"
Feb 13
mazinoz posted a discussion

EDS knowledgeable physios in Brisbane + hip osteoarthritis.

I've been away for a long time - partly NBN and hacker related. However, could someone please help if they know of a physio who truly gets us, or at least is sane and willing to listen and research. I live on the south side - Mansfield, but am willing to travel. Recently I thought I'd chuck in a few side leg raises to my physio exercises. The NEXT day I woke up in severe pain. Quick trip to ER as it was a Saturday. X rays L hip => osteoarthritis, Endone, cane. So I really need to see someone…See More
Jan 25
mazinoz replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"I agree 100% with Zoe.  I'm also female. At the moment males seem on the whole to fare better than females with EDS. At least they don't get incapacitating menstrual periods - in my case with a migraine, vomiting, diarrhoea and…"
Jan 25
Raelene posted a status
"Sorry I have not posted in well years, I forgot my log in, remembered it :D"
Jan 8
Raelene and Cel Fitz are now friends
Jan 8
Miminka updated their profile
Dec 24, 2017
Sandie "Kat" Lambert replied to Jane Tilley's discussion Sudden flare up of symptoms after a massage
"I am sorry for your pain. As a retired massage therapist I would have recommended 2 o3 three sessions of lighter massage and not a deep tissue massage for you. I use to have a had out for people with muscle disorders, this was before my DX. …"
Dec 18, 2017
Zoe replied to Timothy's discussion I have EDS type 3 hypermobility can i have kids ??
"Hey there, I am wondering what you mean by 'can'. Yes you can, but that doesn't mean you should.. and whether you should, is something you have to decide. I personally, have decided not to. hEDS is autosomal dominant. This means…"
Dec 18, 2017
Broken replied to Alex Ringrose's discussion Ear Pain on descent in pressurised aircraft
"I get this all the time when I fly so do my kids. I take pain meds before I fly and then during take off and landing I make sure I am chewing furiously and swallowing lots and forcing my ears to pop during that time.....its a pressure build up, lots…"
Dec 17, 2017
Alex Ringrose posted a discussion

Ear Pain on descent in pressurised aircraft

Hi there. My son has the Type 3 EDS and his life style is very good overall. Over the last few years we have noted a change when he flies in pressurised aircraft. He suffers varying degrees of excruciating pain during the aircraft's descent. He does not have an issue when the aircraft ascends. The assumption here is that during the descent the eardrum is being pushed inwards as pressure increases and this is causing the pain. The pain eventually subsides (over an hour period usually) and he is…See More
Dec 14, 2017
Sarah Martin updated their profile
Dec 12, 2017
Alex Ringrose posted a status
"Alex experiences excruciating ear pain during an aircraft's descent. Has anyone experienced a similar issue? Current solutions not working."
Dec 12, 2017
Timothy posted a discussion

I have EDS type 3 hypermobility can i have kids ??

I am a man and I have been giving this a lot of thought and started wondering if i will be able to have kids and also is there a test to see if i can i would just like to know thanks in advance for your answers :)See More
Nov 16, 2017
Mel mccowan posted a status
"Is there any doctors in Brisbane /Ipswich area who treat EDS ?"
Nov 8, 2017

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