Conversations With.....Our Community | Series 1, Episode 1
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- Опубліковано 15 жов 2024
- We enter 2021 with a new series, Conversations With.... talking to members of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community, from all around the world, living with different types of EDS and of HSD, about life, relationships, physical and mental health, diagnosis, coping, and hopes for the future.
President and CEO of The Ehlers-Danlos Society also lives with EDS, and here talks to Jenni of the UK who has hypermobile Ehlers-Danlos syndrome (hEDS), Anne of Finland who lives with HSD, Annie in the USA who has vascular Ehlers-Danlos syndrome (vEDS), and Sabra in the USA who lives with hEDS.
So great to be involved with this! Thank you for having me! x
Well done lovely! So happy you are able to advocate!
Thank you for being involved Jenni!
I totally get what you're sharing about 1 hr in, the blessing of having a community who just gets you and there's no need to prepare & explain things. What a basic supportive thing we deserve! Continued blessings! You certainly look like a beautiful princess!
Thank you. Looking forward to this series. I’m fairly newly diagnosed at age 58. My journey has taken 50 years starting with my mother taking me to doctors as a child. Even at this age, having the diagnosis has made all the difference. Thank you.
So pleased you finally have answers and can start to put the pieces of the puzzle together for better quality of life.
Thank you all for sharing 🌱
So grateful for this series. I think so much more awareness needs to be spread in the medical community and the support of this community to help each other better self advocate in the medical field is great. I also hope you are right that 2020 will prove to create more empathy for the chronically ill.
Thank you all so much for your helpful comments. I so appreciate that I stumbled across these conversations. It is the first time I have heard someone speak about a lot of the syndromes I have experienced. There is not much support here in Tucson, AZ for EDS and it is very hard for me to explain to others why I feel the way I do and feel very misunderstood. Thank you so much for sharing your experiences.
Thank you for this series. I appreciate all the voices and viewpoints. The discussion on mental health and chronic illness is so important. I have EDS (with comorbid conditions), AND several mental health conditions. Getting proper treatment can be such a challenge.
Thank you Sara, don't forget we also have a helpline and Let's Chat virtual group meetings on Zoom should you ever wish to join or find further support.
@@TheEhlersDanlosSociety how can we join in on the zoom meetings? That would be amazing to be able to connect with others who understand what me and my children are going through as we all have EDS
@@meaganlaplant3363 that is exactly what I am wondering about. I would love to find a groop for teenagers and of course children maybe parents. as well.
Wow thank you so much!! I was diagnosed at 42 and 43 now. I had so many back problems in my 20s and surgery 26 and another surgery 37 fusing my lower spine. 2018 I started having issues with my hands and feet. Lots of pain. 1st rheumatologist found nothing wrong in bloodwork, but did no clinical exam. I decided to get a 2nd opinion a year later or two, and said there was nothing wrong that I was very hypermobile and bendy. Iwas like is that good? and she said no and there was nothing she could do. I was already on some of the right med etc. Igoogled hypermobile and found heds, hsd, eds info... and I was floored. Iset out and found a rheumatologist that specialized in HSD and male arthritis. It was then Igot my diagnosis but no help and guidance. She said there was nothing she could do and no more circus tricks. Through a support group Ifound Dr Azem who also has EDS and RA. Iwent there thinking she would say I don't have EDS. The last dr was so wishy washy about it. She gave me paperwork saying Ihave HEDS, said Idon't have EDS, and then medically coded it as Benign Hypermobility.
So Dr Azem validated Ihave eds as well as a companiion disorded due to multiple bones spurs in many areas. She was infuriated by all the drs Ihave seen and all the signs were there.
Ive gone back and thought about multiple times there were dead giveaways.
thank you all for your stories and sharing!!!
Thank you very much for this conversation. It really helped me. I am 61 years old with CEDS. It took 50 years for a diagnosis of EDS, although I did have the long long path of suspected connective tissue disorder of some kind. I too hope that the next ten years brings more information, understanding and compassion for the EDS condition and those who have it. I too, would like to be involved in these kinds of conversations in the future.Gentle hugs
Thank you so much
I appreciate this discussion. I'm currently seeking a professional diagnosis and I'm very sure this is what's going on with me. Disabled, unable to work with chronic musculoskeletal pain and fatigue. HEDS and POTs would make all the sense in the world. I was shocked when I heard others describe their symptoms and how much mirrored mine! I've been in the situation where doctors have told me "are you sure you're experiencing x, y, z thing?" or downright telling me that what I was experiencing was all in my head or like I was making it up. Thank you again for sharing!
Great video! I can very much relate to all these women. (I have joint hypermobility and am waiting to see if I have EDs or any comorbid conditions). I agree there needs to be more awareness, but I'd also like to see doctors in general have a back up plan in place for when they don't know what's wrong with a patient, that they actually think of these rare conditions. It would be nice also to have more centers that deal with hard to diagnose conditions.
On another note, my husband has been so inspired by my condition and the hardness of diagnosing that he's working on a computer side of diagnosing. Fingers crossed!
I loved hearing each of your experiences! If you are looking to speak with more EDSers I would be happy to participate (I have hEDS). I am thrilled with how EDS knowledge has grown within the community over the last few years, and can hardly wait to see what we can do in the next few years to come.
A very well-handled discussion - particularly noted when touching on vEDS, and acknowledging this one can be potentially life-altering. Thank you :)
Alot of my anxiety had left me since diagnosis
That's so great to hear what an impact getting a diagnosis has made for you.
Thank you so much 🥰
I’m from Helsinki, too, and it was all extremely confusing and unproductive throughout all those years that I lived in Helsinki and then later in another region in the south. When I was 35 in 2002, they wanted to send me to a mental hospital for a fitness for work evaluation. I protested, and got it changed to a different institution that dealt with physiological pathologies, but it was probably not much better. I was told I was anxious, depressed and that I somatised my symptoms. They didn’t believe I could suffer from pain and fatigue just because of hypermobility. They didn’t care that my spine was badly deformed (and probably not adequately dealt with as I was growing up). So I was discarded as unfit for work and barely got any physiotherapy because it wasn’t going to help me get fitter for work. So I was just thrown on the scrap heap basically. I saw a few doctors over the years and some of them were pretty rude. A rheumatologist told me I had a luxury problem and just needed to get a grip and start doing volunteer work. I’m glad I no longer live there because life as a poor person was really awful and there was a lot of bureaucracy involved. You have to pay for this and that out of your own pocket and then claim it back, and if you’re disabled and in receipt of the basic pension only, then you may have to visit the social services in order to get them to pay for your medication and anything else that would be considered necessary for survival (which is really nothing at all). I was unfortunate because the bureaucracy in the small town I moved to was the worst in all the country. It can be a very stressful life and it sure made my condition much worse. Just sharing this in case anyone believes in the tropes we hear about Finland as a welfare state. Sure, they keep you alive, but only just, and the system can be very cruel.
I love this!!!!
Thank you for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
After years of chronic pain, I finally have a doctor who listens me. He is by no means an expert, but he was doing some research because he suspected Ehlers Danlos in another patient. Luckily he's getting me tests I need. He also referred me to the Good Hope Ehlers Danlos in Toronto. They have many experts under one roof.
I'd be happy to participate. I have hEDS with the complication of a serious blood clotting disorder.
i had problems all life multiple diagnosis tests etc at 43 they only considering eds as im now a med student!! and told the dr about it n my gastro said ah yes as my other conditions!!
I'm in Alabama too! Does Sabra have any doctor recommendations?
As a small child ,Has anyone here experienced severe pain in there legs and the back of the legs knee areas would lock up to the point there was no way to get up or move. I was told the pain was growing pains. And that wasn’t true in this case . Locking legs I’d love to know if others has or do experience that .
I would love to be part of the conversation with as someone that lives with hEDS.
Thank you for this, please let me know when you do these. I have vEDS, I’ve had 3 Strokes, 2Brain Aneurysms and one behind my heart and Heart disease. I also am hyper mobile (severe), lung collapses, Rental Detachment and so much more. I’m in excruciating pain every single day. Doctors have laughed at me. Emergency Room Doctors will just talk over me and tell me to shut up. I’m in a Wheelchair, I have no emotional support. I have been suicidal because of it. I just wish I had someone to talk too. New things are popping up and I have no one to tell. I’m sorry this is so long. Oops I just noticed this was done a month ago...sorry just ignore me.
Update: I have watched this again and cried. Why do Doctors laugh at you, make fun of you. I recently been told I have an Aortic Aneurysm. My pain has increased tremendously, in my legs , joints, belly, neck and back. I have Crohn’s Disease and Celiac Disease. I can’t eat anything except a little bit of white rice because it cause either extreme diarrhea or constipation. I too have Generalized Anxiety Disorder, Panic Disorder ( I have them in my sleep) and Depression. When I said Doctors treated badly, they risked my health. They wouldn’t put a tube in my chest when my lung collapsed 100% or give me pain medication, I’m very lucky I didn’t die. After 2 more Spontaneous Lung Collapses I had to have the surgery to remove part of my lung and tack it up to my chest wall to keep it from happening again, the surgery is so much easier now then when I had it.
I remember a doctor when I had one of my strokes and was trying to recover in the hospital, she asked me to lift my leg ( the stroke side) and then she hit me on my leg and said to knock it off, because when I lifted my leg it shook because it was weak.
You are so right about the mental health side of this, they don’t understand what vEDS is. I even said I would try to get them some info, they said “ oh no no, I don’t need that. “ I’m scared everyday of my life.
I’m sorry I have been very long winded, I just have no support, no one to talk to.
I haven’t been hugged or had someone hold my hand or just hold me in over 11 years. Thank you so much for this it’s so nice to hear other people’s experiences, it helps.
I'm so sorry to read this. KNOW YOU ARE NOT ALONE.
Try to find something that makes you smile every day
Many hugs... I have had people question my symptoms. I have not been diagnosed but I truly believe I have this and I may one day get a diagnosis. 💜 God Bless
How can I participate in the next one?
I'd love to know if any of you have used (internally, topically, and/or aromatically) therapeutic pure grade essential oils to help with the variety of symptoms (Anxiety/emotional support, Pain/neurologic-circulatory, etc., Skin/integumentary, bone & connective tissue needs/ Musculoskeletal system, sleep/energy/adrenal health)? If so, which has helped you? If not, what would you be open to focusing on trying now? As a certified holistic health coach who fully empathizes with chronic pain, I'm experienced and trained. I love helping others. AND I'm blessed my Mr Wonderful helps layer supportive oils on me which restores me. Continued blessings, friends! Hearing your stories, I know I can call you friends. You'll accept me and I love learning from each of you, too.