Відео

Almost 40 and finally diagnosed. Been chronically sick all my life. No dr has noticed this …..till my new doctor said I think you may have this. He said genetic testing would show it. He noticed things about me and asked questions no one else did. Since I was a child…..chronic gastrointestinal disorders all my life. Need digestive aides every meal. Nausea all my life. Vomited often as a child. Can’t eat large meals . Almost 39 and now diagnosed.

Thank you for this. I've been motivated to reach out to a genetic counselor to see if I'm dealing with Eds like I presume I am.

thank you for sharing this recourse

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Thank you so much for making this documentary. It’s incredible. I was diagnosed with hEDS last year and this is the first time I’ve seen myself represented. This is such a great resource for others to gain a real insight and understand. Thank you so much for sharing this.

There's not words to express how grateful I am for you and all you do and that you made this documentary. I hadn't heard of EDS until last year and was diagnosed last month (using the classification you co-authored) at 27 after a year of increasing pain and limiting symptoms. I hadn't heard of you until today when I saw a targeted instagram ad. For the first time since I was a teenager I feel hopeful that I can push through and achieve whatever I want to. Thank you for sending out those ads to reach people like me. Thank you, thank you, thank you

Wow danke ich habe eds erst seid ein Monat und bin ein bisschen überfordert wie man mir jetzt weiterhelfen kann. Dieses Video gibt mir so viel Mut dass man nicht alleine ist. Danke ❤️

I was just diagnosed officially yesterday at the age of 46. I do not know why this illness did not present in this severity when I was younger but for 10 years I have had increasing pain that became chronic and limiting in 2020. After having a horrific flare that left me bedbound for 5 weeks in Feb I finally got diagnosed with hEDS at Mayo. I had never even heard of EDS until 2024. Your video is very inspiring because I do miss my old life so much and its so true about this condition making me live in the moment more. And that has actually been a silver lining for me.

19:00 You’re so beautiful even with the extra weight, you are gorgeous 32:00 I have the extreme weight loss, filling up very fast etc, low caecum, and have been seeing a nutritionist regularly, but the endocrinologist said I agave an eating disorder, I’m 47 years old, around 37 kilos now so extremely underweight I eat as much as I can even pushing myself for extra mouthful’s even when I feel full. It takes so much effort and time to gain weight but I can loose it really fast, so every time I gain some, I only have to get an infection or gastro and I can loose it all fast. It’s always been difficult gaining but it’s getting more difficult over time, so I feel extremely exhausted and fatigued. I have a geneticist testing soon, and I am quite positive it’s Ehlers Danlos syndrome that I have. Thanks so much for sharing your experiences with us and Thanks Lara You are amazing ❤

Finally someone I can relate to. Thank you for your inspiring, real and raw doco it explains what we go through and the mental and physical resilience we need to have an ordinary yet exceptional life. Thank you 😊 🎉

I diagonis age 32. Very bad disease

Way to go, you are such an inspiration

Benjamin is a lyrical poet, loved his words.

Thanks to You all for talking about EDS

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All the best in recovery!!! I'm so grateful to see that you were not hurt worse given your EDS!! Anyone falling that far...well, thank goodness you're going to be ok!! I hope your recovery is speedy, and you get back to doing what you do SO WELL - representing people who have EDS so the world is educated!

49 years would have been sooner but I had other rare illnesses (severe endometriosis and Adenomyosis and uterine cancer, Cyclical Cushing's Disease) that delayed diagnosis.

Lara, love your videos, you are inspirational but would really appreciate it if you could share how your eds affects your day to day life and how you manage your symptoms.

I recently worked with a physio therapist. After a few months of painful stretches and strengthening exercise, he tells me that I am hypermobile and I should let my Dr know. I did, we started with Arthritis testing and all of them came out negative. She referred me to an Osteopath and I can't wait to see what test they have for me. I am privileged to have an amazing Dr, and hope that everyone gets to have one like mine.

It is not to overdo. It is to Live life in middle way ! You must try to understand (know) your tissues limit.

Thank you for making this documentary. This is the best thing I've found to share my diagnosis to family and friends. I cried through most of this because at 50 i was finally diagnosed. 30 years of hell in the medical community and the damage is as you might imagine. I can now share this and I will forever be greatful. I don't feel invisible anymore. Thank you doesn't seem enough to say but Thank you

I don’t know how you do it Lara but glad you do! Love to you and your family x

We Zebras appreciate all of the sacrifices you and your family suffer for us! I hope and pray that your family have not felt the hatred that many have for those of your religious background! Gentle hugs!

Why so much travel? If one thing good came from covid it was to show that it's perfectly possible and in many ways preferable to conduct business remotely via zoom /teams etc? It's much safer. It's a hell of a lot cheaper. I also think that we really need to be more aware of our carbon footprint and try to make it as small as possible if we want a planet for our children. Then there is simply the issue of our bodies. Having EDS is hard on the body especially when travelling. So my question is why so much travel? Shouldnt the society be conserving it's finances? I'd assume that there are many extra expenses to take into consideration too. For example medical insurance? Isn't it ridiculously expensive and difficult to obatin when you have a medical condition? I know I personally can't get insurance. And for my children it's incredibly expensive and very restricted in what's covered. So I'd genuinely like to know how you manage to get insurance? It's a question that's asked a lot on EDS groups. Going forward do you think travelling less would be an option. Environmentally surely the society has an obligation to the planet. And financially in a time where we have a cost of living crisis does it not strike you as in poor taste to be jetting off all over the place when technology means it's no longer necessary?

I feel your pain, this condition sucks, im now 43 and have had issues my whole life, and hoping for something to become a treatment someday. What bothers more than anything, is the fact that i passed it on to my children. This is how i figured out that i have eds, i went to doctors over and over, trying to find answers, but they just kept looking af me as a drug addict looking for drugs, even though i kept telling them i also have issues with my stomach and many others, finally after my daughter finding out that she was diagnosed while she was serving in the army, and was discharged under medical discharge, they told her she has eds, mcas, and pots, it finally open the door to give me answers, and seeing it in my son also, it brings tears to my eyes, knowing they have the same. I served in the Marine Corps and it was struggle as it got worse, and more and more my body breaking down and more pain, i couldnt keep going. Thank you for showing the world what we deal with everyday.

Thank you for this! You had me in tears and cheers!

Doesn't matter how old they get, cuddles with kiddos are calming and uplifting at the same time!

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I appreciate the video but the words "rare condition" is what most people (drs) seem to remember. I think it is more rarely diagnosed. Hypermobility Spectrum Disorder is probably far more diagnosed than EDS...and should be mentioned.

Love watching your updates love you guys 🤩🤩🤩

Love that you include Baby Lola in your vlog….as a baby lover, I thank you:). And she looked very attentive when her Mommy was up on stage!

I'm raising awareness throughout the month of May as my sister was diagnosed last year at the age of 18, I'm using tiktok and many other social media outlets to help raise awareness, could I share this video on my pages please?

Many congratulations to you both and a big hello to your precious little bundle 🎉❤❤

Congratulations! Welcome to the world, Lola. 💕💕

Congratulations to you both and your families, a beautiful future is ahead for you all. Shame to hear about the rubbish situation with the car though. Best wishes of health and prosperity for your wonderful family

Congratulations to you both and your families, a beautiful future is ahead for you all. Shame to hear about the rubbish situation with the car though. Best wishes of health and prosperity for your wonderful family

What a gorgeous picture of your beautiful sweet family above. CONGRATULATIONS! Having your baby on your chest is the most amazing and wonderful feeling on earth I feel. I had a smile on my face the entire time after your baby was born. I am a mom of 2 amazing sons and worked in OB for 26 years. Having my babies on my chest was the best but holding the other little one’s for comfort when the mommies were trying to nap (worked at night) was also pretty epic. I am so very happy for you and your lovely wife!!!!

Congratulation to you all!

Congratulations to you both and welcome to the world baby Lola 💕💕💕 Precious times xxx

Congratulations! As a father to now 18 and 17 year old Daughters I will convey to you that nothing has yet exceeded the feeling of being reclined with a sleeping and sighing infant on your chest like that. It’s the best ever.

9,5 years. This is beautiful ♥️ Is it on Spotify as well?

Beautiful! Merry Christmas and Happy New Year. I'd love your red cabbage recipe. :-)

I’m suspected to have hEDS. I’m 17 and my symptoms have presented since I could walk. Including late toe walking (I was around 6-7 when I finally stopped toe walking) I started having chronic pain at 9 in my ankles that moved to my knees when I was 13 and my hips when I was 15. I’m now almost 18 with no official diagnosis. I’m hyper mobile (my biggest symptom) and have several other symptoms and what would be considered side effects of hEDS. After 20+ doctors and living in 4 states I finally got in with a nurse practitioner just to do pre college stuff. We told him about my joint pain and how we had ruled out sprains and arthritis and how my knee was constantly hyperextending. He immediately brought up EDS but we didn’t have much time in office to discuss it. I’m going back in spring and hoping that my list of 24 symptoms will be enough to receive a diagnosis.

Is the EDS Society planning on saying anything about how many EDS patients Canada has euthanized?

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I’m so impressed with how much you get done. Best of luck with the little one and enjoy your break, you deserve it! Merry Christmas!

Hi lovely, Once again a huge thank you 🙏 for everything you do for us Zebra’s 🦓❤️ So happy that all is going well with baby and your lovely wife, it’s such an exciting time and very precious ❤️ Take care and much love to you all 🦓🦓🦓xxx