Ehlers-Danlos is a Crappy thing to have

[Natureboywhooo]

We need some sort of pill or treatment what makes us produce better collogen, come on medical people get on the ball!!!

[HazelLangford]

you sound like my mum talking, I've been told for the past FOUR years of chronic pain, painfull to walk and the docs saying there's nothing wrong with you, I started to think that I was making it up! THERE IS SOMETHING WRONG!

[Geszelda]

Im right there with you i have Ehlers-Danlos type 3

[pamhoag]

Good job

[eileens5]

im 13, and i am about to be diagnosed, and fin out if i have it or not. it scares me alot.... ive heard it gets worse with age...

[tsarina999]

Hear hear.

[jkweirich]

I was diagnosed just over a year ago with EDS type III, after years of suffering. Yes, it is crappy, and way under diagnosed. I really understand the hypochondriac comments too!!! I hate it when people try to pull that! I hope you're daughter is doing well!

[angelEDSer]

I totally agree with everything you said. Thanks for spreading the awareness.

[hrmoore]

When I heard you voice your frustration I felt an instant connection. God, yes! I've been treated for nearly 20 years like a complaining woman. Oh, another ache or pain, another headache. It took an aneurysm in my leg (and my near death) for any doctor to listen to me. I thought surely then, when they diagnosed EDS that then they would know how to treat me. Narcotics? Gee thanks. Now my brain is fuzz. This sucks.

[HolliHeibi]

I am 37, with EDS, crossover of a few types. Vascular has been hinted at, but nothing is certain. After 37 years, of dislocations, bones breaking, a uterine hemorrhage, mitral valve prolapse, tachycardia and all that goes with this genetic load, I still haven't figured out how to deal with it. The pain sustains and there seems no decent future proposals for a much better way of living. I loved your rant. I feel lucky to have found it. Thank you for sharing, truly.

[jg9176]

I have spent years with multiple health problems and have been told it's Lupus, Rheumatoid Arthritis, etc., etc. After multiple dislocations and some research, I discovered an EDS website. The symptoms matched perfectly but the doctors would not listen. My son was sent to a Geneticist however and in his office he confirmed we definitely had EDS and I had passed it down. Sadly, although the dangerous vascular form is suspected, insurance won't pay for the test. God bless the USA! *sarcasm*

[jinnai7]

i'm really sorry to hear that. fingers crossed, and hope youre ok

[kraizeeangel]

I have EDS as well. I am tired of surgeries, I am tired of mind-numbing pain medication, and different splints, bracing, and medical procedures. I understand all too well when she says that it infuriates her to hear EDS patients to be listed as hypochondriacs. My daughter has it as well. Like she said, "Bloody wise up, medical people!"

[sn1pzor]

I agree its crappy..

I have it too, i am 17 and its getting worse.

-greetings from the Netherlands-

[kladams87]

Hi Linda, I am 20 years old and was diagnosed with EDS 10 years 10 years ago. I am sorry to hear about your daughter. I also am in constant pain. I only weight 110 lbs and i am not involved in any sports. Doctors have told me I need to build up lots of muscle around the joints which will put less pressure on the joints and I will not be in so much pain.

One thing they recommend i start is Martial Arts. Maybe your daughter can try this. Is she taking any medication for pain? or anything at all?

[BizzyLizzy132]

I am so very sorry that your daughter has such severe symptoms.

I have it but I am very lucky my joints are just very flexible,my son also has it all the majority of his joints dislocate often.

Realized something was,nt right when he turned his legs around the other way and walked.Unfortunately the older he is getting more joints are dislocating.

[BendyCowgirl]

Thanks for putting this out there. EDS made my life hell and truend me into an old woman before my 30th birthday and I've applied for DLA three tims nad turned down three times and called a liar. Told here was nothing wrong with me. It's heartbreaking.

[Lin171]

Great video. I was called a hypochondriac for years and have psychological scars from that. Its SO hard for me to come forward and ask for help. Before my diagnosis I believed I was a hypochondriac, so I go back to that and doubt myself or worry that the Dr is going to think I'm making things up. Great for you helping your daughter out!

[Rekisum]

The quality of this video is not important.

Feel very sory for the poor girl that's severely hit compared to me.

I understand why this video is made, and you've got my symphaty... doesn't help much i know... but i feel a comford i knowing theres others like me... and for the same reason i also feel a sadness.

To put it in a language every one can understand... it's a shitty condition.

[ReineDeLaSeine14]

I had been diagnosed with Somatization Disorder. Luckily it has been erased from my records...but I'll never forget the person who did that to me.

Sums it up nicely!

[ReineDeLaSeine14]

It is total crap. I agree.

[RobNorthampton]

I really wish that there was something that could be done, Linda. I can see and hear the frustration and emotion in your voice. It's very humbling to watch your videos, and makes those of us that are able-bodied sit up and realise just how fortunate we are.

[Elfins]

Thanks Rob :) It doesnt help as we both have health problems but my frustration is not being able to help her rather than myself. Her sleep is back to front at the moment after her pelvis went out last Tuesday hense being awake most of the night. Funnily enough I know what you mean by being fortunate because even with all her problems she actually feels sorry for other people with problems rather than herself, a testiment to her strengh and compassion for others :)

[Elfins]

Frame it, thats priceless :) My daughter spent years in the hands of mental health because ( and this is the kicker ) they didnt want her to get depressed. The trouble was that they spent the whole time trying to convince her that it was mind over matter that there wasnt a physical cause for her pain which infuriated her. They just couldnt accept that it was their treatment that was the route of her being fed up and not wanting to talk to them. Oh well, at least we dont have that now....phew :)

[korkyackland1969]

it Furiates me too!!! Gentle hugs for your daughter being careful so nothing pops out on either of us! I've had the stupid doctor thing many a time, before I was diagnosed I was sent to mental health...they wrote my doc a letter saying 'this lady is showing no signs of clinical depression'....I got a copy and I wanted to frame it! Well done on your nocturnal rant, lets hope some doocs read this and see a little of how much we suffer!!