I wanted to make this video to explain the best I could as to why I use a wheelchair and how I suffered my spinal cord injury. click -> ua-cam.com/video/2GA-MNVozgo/v-deo.html to watch part two of this video. I feel there are a few “newly injured” spinal cord injury story on youtube, but I wanted to make this video to show that SCI can happen at any age, and not all SCI are the result of an “accident.” Telling my story its always hard, and always emotional. Over time it has got a little easier, but the trauma is still there. If you are coming to terms with a spinal cord injury, I have lots of videos that I think will help you. When I was injured 25 years ago I had no one, I was increadibly lonely, and completely lost. I think this is why it took me so long to come to terms with my disability. In my next video I’m going to be discussing how I was told I suffered a SCI, and my struggles at dealing with the life changing news. It’s not pretty, and it’s going to be hard. But if my story helps one person out there, I have done the right thing. Lots of love Gem
Dear Gem, this video must have been so hard on you!!!! I can relate to your feelings so much! When you are a child and don't know what the grown ups are talking about behind your back it is so annoying and frustrating! SCI causes are so different. Accidents, surgeries, even just a little stumbling and falling on to the ground can cause a SCI. Thank you so much for sharing your story! Hopefully this will encourage others, who have gióne through this too to open up about their stories and maybe start conversation with you and your big community, which is, for me, so helpful! Wishing you a wonderful day today, best regards Britta
Dear Gem, Your videos definetly help. Even though i don't have a SCI, i have a rare condition that forces me to use a (electric) wheelchair more and more often. Your videos help me a lot with the psychological struggles that i'm having trying to come to terms with it. Especially the videos you did about the reactions of others and accepting your own (dis)abilities. Because i'm stil able to stand and walk a bit (and you can't see what i have from looking at me) i had a lot off struggles with thinking others were looking at me accusingly. It took me a long time to get to the point of accepting that having a wheelchair doesn't mean i shouldn't be able to walk at all and too accept the wheelchair especially because it helps me preserve my body and the ability too walk. Your videos are a mayor help in that procces. Thank you!
I was born at 24 weeks gestation and I had 5% chance of living when I was only a baby I had to go to a hospital in london to have a heart surgery on a valve in or near my heart becase when your a baby the valve is ment to close naturally but mine never did. (Sorry about spelling)
This is exactly why they keep people, especially children, under until the tube comes out in most cases. Bless you and your life, you are clearly MEANT to be here on earth❤️
B K yes if you are incubated you are either in a coma not of the doctors doing, in a medicated coma, or are coming out of sleep and are HEAVILY medicated. With adults they can gauge the responses they give and will taper the medication as needed. With little ones who cannot comprehend what is happening to them, they tend to keep them heavily medicated and in a state of sleep to keep them from experiencing the panic. Especially if they’ve just had heart surgery.
B K trachs, I would say, are a different circumstance, though. You don’t choke so much on a trach. It’s painful until the tract heals and you’ve got to get used to not fighting it (if you even *can* - if you have the chest or diaphragm control to push against the machine) but it’s not so panic inducing, especially since you’ve often been intubated for a while before you get an indwelling tube like that.
My cousin was born with an aorta coarctation. It was discovered at birth because he had really high blood pressure, and had to get open heart surgery at 3 days of age. He battled a nosocomial infection and stayed at the hospital for 2 months. He's now 30 and has a totally normal life. He has the same scar, but his is nearly invisible, it's so thin.
I am so,glad that you are alive. Your tissue disease made that rupture happening after surgery, don t ever blame yourself for panicking under intubation (just in vase you do), I am pretty sure it would have ruptured some time after the surgery anyhow, probably during a cough or sneeze - that is an educated guess (I am a pediatric cadiologist). It saved your life that you were intubated in intensive care - saved precious minutes! Incomplete spinal injury is a big risk in aortic surgeryand much higher in patients with aortic ruptures and dissue disease.... Just discovered your channel today and you helped me a lot already just being like you are! I have psoriatic arthritis, am already partly in a wheelchair at work and just got meassured for my one at home..... keep up your good work! 🤗🌈
go ahead and let the tears flow. They are tears of strength because you survived a terrible situation. You are a warrior, you survive every day with a smile and with a giving heart.
You mentioning vEDS didn’t surprise me at all after having mentioned the tissue paper thin aorta. I remember you mentioning in the past about having EDS at least. Tissue fragility of major blood vessels is definitely more associated with vEDS than other types. But tbh, they should keep monitoring you annually so there’s no issues elsewhere, and preferably run a genetic panel too to see if you are genetically vEDS or another type
Yeah, especially considering how young you were when having the first surgery. Even among Marfan patients you don’t see all that many below teenage years needing to have surgery to repair an aneurysm. Aneurysms is of course not the same as a narrowing of the blood vessel but still, principle is the same: the tissue can be very fragile. I think an annual echo of your heart and aorta at least wouldn’t be a bad thing considering your childhood. Always better to be safe than sorry when it comes to aortic issues. I know a few dissection survivors but they were all really lucky to live (and they’re all with Marfan Syndrome)
Tricia Smith vEDS sure is some scary stuff! Luckily I have hEDS with no reason to suspect anything else, if anything at all I may have some crossover symptoms from cEDS, but nothing more sinister than that really. I’m like a textbook case of hEDS in a way
This must have been so hard to share and recount, it's really generous of you to choose to do it anyway in the interest of sharing with others who might be looking for similar stories to theirs. So much love and strength to you. Hope you have a great day
Wow. My injury was last year. Caudia Equina Syndrome. A condition that is so rare that there is hardly any awareness for it. Not realising it's a 48hr emergency surgery condition and the fact that my doctors surgery didn't recognise the red flag of numbness below the waist. I spent the next 2 weeks thinking it was sciatica and did the appropriate sciatic exercises. Those exercises gave me permanent nerve damage from the stenosis. I used to love my life and this last year has been fantastically difficult. I have no bowel or bladder sensation and the management of that just to keep some mental dignity is excruciating. I live alone and have often thought about taking every pill I have and lying down. I found your channel recently. You and Sean have given me so much inspiration to crack on. I've booked a holiday to Wales next year. You saved my life. I know you're talking to a camera in your mind but beyond your realm you are giving ppl hope. Please keep enjoying life so I can enjoy it with you. Much love from Norfolk.
I was a preemie and had 2 holes in my heart. They healed on their own. Then I had an mri when I was 15 and they found I had the connections to one lung wrong so only one lung was getting oxygenated blood. Finally last February just before my 18th birthday I was operated on
Hearing that you dealt with all this and still have one of my conditions, and you are still a mom and a real adult, it really makes me feel like I will be able to be a functioning adult who can live by herself. So thank you! (Trigger warning dependence and paralysis) I was once involved getting a bill passed that had to do with allergies and Epi pens in schools, and I met a girl who was without oxygen for 10 minutes. She was completely reliant on others and was completely paralyzed with involuntary muscle movements. She unfortunately had suffered brain damage and it was unsure how much she understood. When you said that you were without oxygen, I was like wow. Hearing that you dealt with all this and still have one of my conditions, and you are still a mom and a real adult, it really makes me feel like I will be able to be a functioning adult who can live by herself. So thank you!
It is amazing that you're still here today. I have what has been diagnosed as hEDS, but presents way more as cEDS. As a consequence, I have POTS and just the tests that the cardiologist run to ensure and triple check to make sure there is no signs of vEDS, even without me having the known genes for it, made me fully understand how serious vEDS is. I hope that your complications have since been lessened and continue to be so in the future.
I had my second open heart surgery for my congenital heart defects in 2013. I did suffer what they are now calling a brain injury. It was hard when my physical therapist told me. I was very weak with walking and doing tasks that I had to use my legs for. Both my physical therapist and my congenital heart team have had a hard time with the news of the brain injury. I finally walked a few steps without my walker last year. I have good days where I am ok. I also have bad days where I break down in to tears because of the brain injury I suffered. I am grateful for everything my team has done for me since I am an aunt now and I love all my kids!
Thank you for sharing this. I had an operation go wrong and I've never met anyone who's been through anything similar. I'm so sorry you had to go through this, what I went through was very different but sharing your story helps me feel less alone. Thank you so much xxx
Thats interesting. Iv not met anyone who has had complications either. People are so shocked and don't really think of the risks, and don't like to believe that it can happen. Thats why I would never have any voluntary surgery. (like plastic surgery.)
Wheelsnoheels - Gem Hubbard I also had complications from my open heart surgery in 2013 for my congenital heart defects. I suffered a brain injury during the surgery. My legs were very stiff, and weak. My legs felt very tight which my physical therapist said was from the spasticity in my muscles from the loss of blood flow and the electrical signals having a hard time getting to the muscles. Thank you for this video. It helps me not feel so alone with what has happened to me
This was a hard video to watch. I'm sure it was even harder to make. I'm so glad you came out on the other side and have come to terms with everything as best you can.
🤗Gem you're amazing. Not Quite sure what to say other than this. Never look back unless it's to see how far you've come. Your a true fighter with an amazing family who obviously adore you.
Gem I have a very different story as my disability is different to yours but I see similarities too such as veins bleeding, being rushed back to operate, drugs making me not understand what was going on, not being able to remember everything, almost dying, crying myself to sleep, not being able to go straight back to school for a while after. My story was of having a brain tumour though. Thankfully I am still able to walk. Technology really has advanced now yet people are still not getting the best treatment. It’s interesting to hear your stories. Stay strong.
I know I am seeing this after the fact, but I hope you are paying close attention to your mental health as well. PTSD from medical trauma is a real thing and deserves some attention.
It was for a different defect, but the granddaughter of people we know had her most recent open heart surgery at the age of almost 9 (about 1 month before her 9th birthday) and also ended up paralyzed from the waist down due to complications during surgery (different kind of complication, but the effect was the same). As soon as I found out what had happened to her, I immediately thought of you - your stories are so eerily similar that I'm going to tell them about your channel.
Bless you, just found your site and so grateful to you. I am a recent wheelchair user and these video are so helpful to me. Thank you. More power to you.
Hi Gem, you are such an amazing and beautiful young lady i had tears in my eyes too I really admire you for sharing your story to me you have got a wonderful strong character and definitely won't let anyone or anything get you down you are a proper fighter Good on you girl definitely keep your spirits up and go conquer the world 👍 all the best Lin in South Wales uk 💞 🦋🐕
I had Aortic Dissection surgery and that paralyzed me. It saved my life but it caused me to have a stroke so I’m now left side hemiplegic. It’s so strange because my condition is so different than other wheelchair users. My left side is hyper sensitive even though it’s paralyzed and the right side works but my right leg can’t feel heat, (even boiling water) but cold water scalds me. My hand is not as extreme but I can still feel heat just not as much as the left side. I can’t walk but I can stand up. I speak normally though.
You are amazing. You are definitely a fighter and you were absolutely meant to be here on this Earth to share and inspire others. 💕 Thank you for sharing your story with us.
Thank you for sharing this. I can relate to so much of it. I especially liked you talking about the voices. I always felt there was a radio somewhere that was just at the edge of my hearing. The song was “comforting” but I couldn’t quite hear the words. My roommate at the time told me not to tell anyone for fear of being locked up :)
This video make me sad, but your smile is so beautiful and full of power, I think you have been lucky enough to be so clever and good quality speech. Hugs from Italy
Hi Gem! Thank you for sharing your story, even when it was hard. I really appreciate you sharing your stories and shedding light on various disability and mobility issues. I actually also have EDS, which causes my joints to dislocate multiple times a day, and I use a wheelchair part time. It's really nice to have you to look up to!
God Bless you, Thank you for sharing your story. It takes a strong, brave, and incredible person. Like yourself. To push threw all you have. I was left without the full usage of a limb. One day at age 12. And after a 20 year fight. I will loose my leg this week. Finally. Thank you again.
Thank you for sharing this. It is obviously a very painful thing to re-live. You are obviously a fighter and have chosen to fight not only for yourself but for so many others as well.
Hi, Gem! I just happened to come across your channel, and your lifestyle videos intrigued me as a nondisabled person who works in theatre venues in the United States that are striving to be more fully accessible to our patrons. I saw you posted this story of your spinal cord injury, and truly I was moved to tears by the grace and candor with which you told it. Reliving painful memories is hard enough, but yours is an important story to tell and as a person being educated by your experience, I want to express my gratitude for your sharing. - Cara from Chicago
I just found your channel, you are an amazing fighter. I always believe the universe puts people in your life at the right time. I’m battling some new chronic health issues in addition to the laundry list I have had for years and yesterday I broke down and was not sure I could do this. You have restored my faith in myself. Thank you so very much. Huge hugs to you ❤️💜💓
Awe thank you for sharing, I know that was hard. You are a beautiful woman and an inspiration and can I borrow some of that hair? Girl you have the most gorgeous hair which I’m sure you hear all of the time! What products do you use you should do a hair product video or maybe you already have? Have you done a video about how you met your husband? I would love to hear your love story video about your relationship and how you met etc. you have a beautiful family as well. I have watched your videos and I loved them I love Disney World so much, we went there on our honeymoon and stayed at the Polynesian this year will be our 25th wedding anniversary! So Disney has a special place in our hearts. I also loved watching your dancing adventures when you went to California just recently that was so amazing that you traveled alone, good for you! I really admire and look up to you. Hugs your way! ❤️
I love you and I am so glad you made it, im sorry you had to go through that but I'm glad you did. I am personally proud to work in the same field as that surgeon who managed to pull you back from the brink in your ICU room and while I am yet to finish the video I di hope you consider it all worth it
Thank you so much for sharing such a personal story and one that’s clearly difficult to talk about. It shows the kind of gentle, caring soul you have that you hope to help others and I’m sure there will be many who find comfort and valuable insight after watching this 💗
I’m so sorry this happned to you! It might be worth doing genetic testing to really find out if you have Vascular EDS (I have Hypermobile EDS) because if you have that you need to be under constant monitoring since it’s really dangerous!
Wow, your story is so incredible. I'm happy you're still with us! I have hyper-mobile EDS, although I haven't yet had the genetic testing to rule out VEDS. I appreciate your videos so much. I'm a part time (almost full time) wheelchair user and your videos have helped me so much, I can't even tell you. Thank you for being so open and vulnerable and sharing your amazing story with us.
Thank you for being so honest and telling your story. It take pure strength and guts to put this out there and I’m sure your story will help many or may be similar to someone. So much respect for you 🤗🥰🤗
Have you ever been checked for EDS? Your story reminds me of vEDS with all the tissue fragility; just a thought. Thanks for sharing your story! Your awesome, Gem! Edit: I clearly wrote this before I came to the end of the video when you mention vEDS haha!
LOL I was seconds away from posting a comment about EDS too before she said it! Too funny! I feel like us EDSers are pros at spotting it with just a little bit of information. Which makes me so angry that it takes doctors so long to catch it.
Loved the video (I'm also disabled, albeit invisibly, and I know how hard it can be to talk about the source of that disability), but I was wondering if you would consider captioning your videos? Google's automatic captions don't seem to be very accurate, and it makes your video(s) much, much less accessible.
Thank you for sharing your story Gem, I think it could really help others who find themselves in a similar situation. Wishing you all the best, thanks for your informative videos!
From what I know they still do health screenings at schools. Even in middle school. I graduated 8th grade in 2017 and I had a yearly check by the school nurse from kindergarten to 8th grade. That was 3 years ago, I think they still have it.
You’re awesome and definitely a strong fighter. Thanks for sharing your story. I stumbled upon your channel in my recommendations (probably because I also have a heart condition/had heart surgery and have EDS). I love your attitude of just living your life and making it the best it can be. That’s exactly what I live by. People often ask me how I’m not afraid of death (my heart condition is a genetic sudden death syndrome that has already killed my aunt, my mom’s cousin, and caused my mom to have 3 sudden cardiac arrests). I tell them I just want to live my life as best I can, however long I get to live. Sending you much love from Canada.
You go girl! I have EDS too (and sudden death heart conditions run in my husband's line), so facing the possibility of dying young is definitely something that we have to come to terms with.
I have to admit I cried during this story. Although my complications have not been anywhere near as severe as yours, I related to this story. I am 19, and have had about 7 surgeries - both abdominal and orthopaedic. I had a lot of medical issues growing up, starting as early as I can remember and it really got severe at about 13. I was diagnosed and had surgery for Endometriosis at only 14, when most of my friends had never menstruated before. I would repeatedly snap and stretch ligaments in my ankle (from just playing at lunch times), to the point I had damaged both ankles so bad my mum had to carry me into the doctors. It wasn’t until I was 16, I was diagnosed with EDS. That diagnosis took 12 years. I was finally able to see surgeons, specialists and physiotherapists who could help me & that same year I had my first ankle reconstruction. Due to this, I have a wheelchair but am still struggling with accepting that I am disabled, so I only use it when I have no other option. Thank you for sharing your incredible journey ❤️
Thank you so much for sharing Gem! This was really emotional to watch. You are so strong and inspirational- thank you for being so open and honest, and advocating for all of us disabled 💙
They did a few screenings at my school. I remember once the public hospital came and took blood tests from everyone to check for sickle cell. Which was a good thing because a decent amount of students either had sickle cell or the trait. Most people don't bother getting tested until they start having health problems. They also checked for diabetes
I was going to comment about vascular EDS!! then you said it! its actually pretty important to get checks ect. Theres a doctor in London called Doctor Hakim who's really great with is, he would see you for free, he writes most of the papers for the EDS society.
5:17 I HAVE THE SAME SCAR I mean, my heart surgery went fine so I ain't complaining, but this is the first time seeing someone with the exact same type of scar.
When you was 6 here it's named a „big heart catheter“. There they can go through arteries and with a camera and perhaps a filter like a balloon to open up venes and arteries near. It's so much better than the catheter with camera beginning at your arm..
watching this as someone with two open heart surgeries under their belt is kinda scary ngl. I liked the bit about ultra sounds bc they really do try to choke you with the sensor ESPECIALLY when youre small.
Gem I teared up watching this! You have such a beautiful spirit and I have to say I am amazed at how you've persevered through this; it must have been so scary. You're a badass!
This is absolutely crazy, my dad had a coarctation of the aorta that they only caught when he was in his thirties, it’s extremely rare to find an adult with a coarctation. I’ve never heard of anyone else having this. So sorry this happened to you!
My mum has it as well it was picked up when she was 18, 41yrs ago now. Hope your dad is doing well. I haven't heard of many people with it as well. Hope you got yourself checked out for it when your dads was discovered.
Emily Swalwell I have not yet, I was only five when they found his, but I’ve been thinking about getting a whole cardiac work up done recently as we haves lot of heart problems in our family
You are a fighter ❤ thankyou for sharing your story with us, keep fighting and shining your light on this world 💫 this was hard to watch without crying, I'm so sorry you went through this x
Just found your channel and watched a couple of your episodes. Thank you for sharing your story, I'm looking forward to watching all of your videos. I was diagnosed with Cauda Equine 14 years ago and had surgery 13 years ago, sadly I left it to late to see a doctor, typical male or more likely I was terrified it was MS. Nett result is I have problems walking, I have chronic pain.
I had surgery to remove a tumor from my ear when I was 8. I did not really understand that it was major urgent surgery because although the tumor was benign, it was growing and the doctors felt we had very little time before it grew into my brain and caused brain damage. It did not hit home to me that I really dodged a bullet until a year later when I had a recheck and all my family and doctors were so relieved that there was no sign of regrowth. I had had multiple previous surgeries and issues with my ear since birth so it was just another ear thing for me. But although the surgery left me deaf in that ear, it likely saved my life. Also, I have EDS although not the vascular kind. I strongly encourage you to get genetic testing to confirm or rule out vEDS both for your sake AND your daughter’s. Although there is no ongoing treatment for veds, knowing you have it is vital information for first responders and ER personnel in case of an accident or emergency. Even though I have the hypermobile type eds, my doctor has warned me that I am at a higher risk for dissections, aneurisms and organ rupture. So for example, I was having shortness of breath, pain in my chest wall and lightheadedness. Although both the doctor and I were pretty sure it was caused by an asthma flare up, he ordered an urgent CT scan to be sure there was no sign of aneurism or dissection simply because I have EDS. After that came back clean, he did a chest xray which showed I had pleurisy. In a non eds patient, he would have not done the CT scan unless there were additional symptoms. And since eds is genetic, it will be important for your daughter to know if the gene for veds is in the family.
I heard you explain this situation before and I still my heartaches for your childhood.im standing with you as you tell this horrific event. I wish I could hand you a tissue. Wasn't it weird though with them going thru your groin? When I had brain surgery they went through my groin to repair aneurysm in my brain. I was dumbfounded. But when they explained I guess it makes sense. The only other time they scared me so bad was when they did surgery to install a pump in my spine cord and they didn't know it was leaking. That is the worst pain I ever felt. It feels like your brain is going to explode. However, you have created a site were people can go and discuss things with others going through the same things. Thank you for that. Now, onwards and upwards folks.
You dear sweet soul. I hope this isn't speaking out of turn, but watching you I wonder if there's an element of post traumatic stress going on for you? Only thinking as I've had emdr therapy for that very reason, and it helped hugely. Like, I didn't think it ever would but I had to have it as I'm having surgery soon and they want me in my best mental state for that. But it's a massive trauma you have had in your life, and sharing with you about the emdr therapy actually might really help. It might be something to pursue one day x
I wanted to make this video to explain the best I could as to why I use a wheelchair and how I suffered my spinal cord injury. click -> ua-cam.com/video/2GA-MNVozgo/v-deo.html to watch part two of this video.
I feel there are a few “newly injured” spinal cord injury story on youtube, but I wanted to make this video to show that SCI can happen at any age, and not all SCI are the result of an “accident.” Telling my story its always hard, and always emotional. Over time it has got a little easier, but the trauma is still there.
If you are coming to terms with a spinal cord injury, I have lots of videos that I think will help you. When I was injured 25 years ago I had no one, I was increadibly lonely, and completely lost. I think this is why it took me so long to come to terms with my disability. In my next video I’m going to be discussing how I was told I suffered a SCI, and my struggles at dealing with the life changing news. It’s not pretty, and it’s going to be hard. But if my story helps one person out there, I have done the right thing.
Lots of love
Gem
Dear Gem, this video must have been so hard on you!!!! I can relate to your feelings so much!
When you are a child and don't know what the grown ups are talking about behind your back it is so annoying and frustrating!
SCI causes are so different. Accidents, surgeries, even just a little stumbling and falling on to the ground can cause a SCI.
Thank you so much for sharing your story! Hopefully this will encourage others, who have gióne through this too to open up about their stories and maybe start conversation with you and your big community, which is, for me, so helpful!
Wishing you a wonderful day today, best regards Britta
Dear Gem,
Your videos definetly help. Even though i don't have a SCI, i have a rare condition that forces me to use a (electric) wheelchair more and more often. Your videos help me a lot with the psychological struggles that i'm having trying to come to terms with it. Especially the videos you did about the reactions of others and accepting your own (dis)abilities. Because i'm stil able to stand and walk a bit (and you can't see what i have from looking at me) i had a lot off struggles with thinking others were looking at me accusingly. It took me a long time to get to the point of accepting that having a wheelchair doesn't mean i shouldn't be able to walk at all and too accept the wheelchair especially because it helps me preserve my body and the ability too walk.
Your videos are a mayor help in that procces. Thank you!
I was born at 24 weeks gestation and I had 5% chance of living when I was only a baby I had to go to a hospital in london to have a heart surgery on a valve in or near my heart becase when your a baby the valve is ment to close naturally but mine never did. (Sorry about spelling)
ERRTTY
I have a medical question, not ur hospital time but can u " feel the urge to pee or poop ?" Sorry if that was bit T.M.I .
This is exactly why they keep people, especially children, under until the tube comes out in most cases. Bless you and your life, you are clearly MEANT to be here on earth❤️
Uh, no...
B K yes if you are incubated you are either in a coma not of the doctors doing, in a medicated coma, or are coming out of sleep and are HEAVILY medicated. With adults they can gauge the responses they give and will taper the medication as needed. With little ones who cannot comprehend what is happening to them, they tend to keep them heavily medicated and in a state of sleep to keep them from experiencing the panic. Especially if they’ve just had heart surgery.
Wow, tell that to the intubated and awake/alert/concious/aware patients I have taken care of before they were either extubated or trached.
B K Mary seems to be under the impression that those patients are only adults.
B K trachs, I would say, are a different circumstance, though. You don’t choke so much on a trach. It’s painful until the tract heals and you’ve got to get used to not fighting it (if you even *can* - if you have the chest or diaphragm control to push against the machine) but it’s not so panic inducing, especially since you’ve often been intubated for a while before you get an indwelling tube like that.
My cousin was born with an aorta coarctation. It was discovered at birth because he had really high blood pressure, and had to get open heart surgery at 3 days of age. He battled a nosocomial infection and stayed at the hospital for 2 months. He's now 30 and has a totally normal life. He has the same scar, but his is nearly invisible, it's so thin.
I am so,glad that you are alive. Your tissue disease made that rupture happening after surgery, don t ever blame yourself for panicking under intubation (just in vase you do), I am pretty sure it would have ruptured some time after the surgery anyhow, probably during a cough or sneeze - that is an educated guess (I am a pediatric cadiologist). It saved your life that you were intubated in intensive care - saved precious minutes! Incomplete spinal injury is a big risk in aortic surgeryand much higher in patients with aortic ruptures and dissue disease....
Just discovered your channel today and you helped me a lot already just being like you are! I have psoriatic arthritis, am already partly in a wheelchair at work and just got meassured for my one at home..... keep up your good work! 🤗🌈
go ahead and let the tears flow. They are tears of strength because you survived a terrible situation. You are a warrior, you survive every day with a smile and with a giving heart.
You mentioning vEDS didn’t surprise me at all after having mentioned the tissue paper thin aorta. I remember you mentioning in the past about having EDS at least. Tissue fragility of major blood vessels is definitely more associated with vEDS than other types. But tbh, they should keep monitoring you annually so there’s no issues elsewhere, and preferably run a genetic panel too to see if you are genetically vEDS or another type
Yeah your right. I should xx
Yeah, especially considering how young you were when having the first surgery. Even among Marfan patients you don’t see all that many below teenage years needing to have surgery to repair an aneurysm. Aneurysms is of course not the same as a narrowing of the blood vessel but still, principle is the same: the tissue can be very fragile. I think an annual echo of your heart and aorta at least wouldn’t be a bad thing considering your childhood. Always better to be safe than sorry when it comes to aortic issues. I know a few dissection survivors but they were all really lucky to live (and they’re all with Marfan Syndrome)
Rey Of Light my daughters and I need to get genetic testing to rule out the other typed but our drs are pretty sure we have hEDS. vEDS is scary!!!
Tricia Smith vEDS sure is some scary stuff! Luckily I have hEDS with no reason to suspect anything else, if anything at all I may have some crossover symptoms from cEDS, but nothing more sinister than that really. I’m like a textbook case of hEDS in a way
Rey Of Light I actually thought of Loeys-Dietz Syndrome. It causes aortic problems much earlier than Marfan
This is so hard to watch, I can’t even imagine how hard it was for you to tell!
This must have been so hard to share and recount, it's really generous of you to choose to do it anyway in the interest of sharing with others who might be looking for similar stories to theirs. So much love and strength to you. Hope you have a great day
Wow. My injury was last year. Caudia Equina Syndrome. A condition that is so rare that there is hardly any awareness for it. Not realising it's a 48hr emergency surgery condition and the fact that my doctors surgery didn't recognise the red flag of numbness below the waist. I spent the next 2 weeks thinking it was sciatica and did the appropriate sciatic exercises. Those exercises gave me permanent nerve damage from the stenosis. I used to love my life and this last year has been fantastically difficult. I have no bowel or bladder sensation and the management of that just to keep some mental dignity is excruciating. I live alone and have often thought about taking every pill I have and lying down. I found your channel recently. You and Sean have given me so much inspiration to crack on. I've booked a holiday to Wales next year. You saved my life. I know you're talking to a camera in your mind but beyond your realm you are giving ppl hope. Please keep enjoying life so I can enjoy it with you. Much love from Norfolk.
I was a preemie and had 2 holes in my heart. They healed on their own. Then I had an mri when I was 15 and they found I had the connections to one lung wrong so only one lung was getting oxygenated blood. Finally last February just before my 18th birthday I was operated on
Mine’s not really an injury or an accident. I was born with Spina Bifida. Mine is more like my spine didn’t fully develop.
Hearing that you dealt with all this and still have one of my conditions, and you are still a mom and a real adult, it really makes me feel like I will be able to be a functioning adult who can live by herself. So thank you!
(Trigger warning dependence and paralysis)
I was once involved getting a bill passed that had to do with allergies and Epi pens in schools, and I met a girl who was without oxygen for 10 minutes. She was completely reliant on others and was completely paralyzed with involuntary muscle movements. She unfortunately had suffered brain damage and it was unsure how much she understood. When you said that you were without oxygen, I was like wow. Hearing that you dealt with all this and still have one of my conditions, and you are still a mom and a real adult, it really makes me feel like I will be able to be a functioning adult who can live by herself. So thank you!
It is amazing that you're still here today. I have what has been diagnosed as hEDS, but presents way more as cEDS. As a consequence, I have POTS and just the tests that the cardiologist run to ensure and triple check to make sure there is no signs of vEDS, even without me having the known genes for it, made me fully understand how serious vEDS is. I hope that your complications have since been lessened and continue to be so in the future.
I had my second open heart surgery for my congenital heart defects in 2013. I did suffer what they are now calling a brain injury. It was hard when my physical therapist told me. I was very weak with walking and doing tasks that I had to use my legs for. Both my physical therapist and my congenital heart team have had a hard time with the news of the brain injury. I finally walked a few steps without my walker last year. I have good days where I am ok. I also have bad days where I break down in to tears because of the brain injury I suffered. I am grateful for everything my team has done for me since I am an aunt now and I love all my kids!
Inspiring!
Thank you for sharing this. I had an operation go wrong and I've never met anyone who's been through anything similar. I'm so sorry you had to go through this, what I went through was very different but sharing your story helps me feel less alone. Thank you so much xxx
Thats interesting. Iv not met anyone who has had complications either. People are so shocked and don't really think of the risks, and don't like to believe that it can happen. Thats why I would never have any voluntary surgery. (like plastic surgery.)
Wheelsnoheels - Gem Hubbard I also had complications from my open heart surgery in 2013 for my congenital heart defects. I suffered a brain injury during the surgery. My legs were very stiff, and weak. My legs felt very tight which my physical therapist said was from the spasticity in my muscles from the loss of blood flow and the electrical signals having a hard time getting to the muscles. Thank you for this video. It helps me not feel so alone with what has happened to me
Oh Gem, thank you for sharing such a personal part of your life with us. You had me crying.
This was a hard video to watch. I'm sure it was even harder to make. I'm so glad you came out on the other side and have come to terms with everything as best you can.
It was
Thank you for sharing your story with me. I had back surgery in my 40's to put rods in and I became a wheelchair user after that.
🤗Gem you're amazing. Not Quite sure what to say other than this. Never look back unless it's to see how far you've come. Your a true fighter with an amazing family who obviously adore you.
I'm so sorry you had to deal with all that, especially as a kid. I'm glad that even then, you could find a spark of happiness. ❤🩹
Gem I have a very different story as my disability is different to yours but I see similarities too such as veins bleeding, being rushed back to operate, drugs making me not understand what was going on, not being able to remember everything, almost dying, crying myself to sleep, not being able to go straight back to school for a while after. My story was of having a brain tumour though. Thankfully I am still able to walk. Technology really has advanced now yet people are still not getting the best treatment. It’s interesting to hear your stories. Stay strong.
I know I am seeing this after the fact, but I hope you are paying close attention to your mental health as well. PTSD from medical trauma is a real thing and deserves some attention.
It was for a different defect, but the granddaughter of people we know had her most recent open heart surgery at the age of almost 9 (about 1 month before her 9th birthday) and also ended up paralyzed from the waist down due to complications during surgery (different kind of complication, but the effect was the same). As soon as I found out what had happened to her, I immediately thought of you - your stories are so eerily similar that I'm going to tell them about your channel.
Bless you, just found your site and so grateful to you. I am a recent wheelchair user and these video are so helpful to me. Thank you. More power to you.
Sharing your painful story has truly helped a lot of people, even myself. Thank you so much for your bravery and strength 💪 ❤
You've taken this straight up and made yourself a wonderful inspiring presence on YT and elsewhere. Honored to be a member of the Gem fan club ! ♥
Hi Gem, you are such an amazing and beautiful young lady i had tears in my eyes too I really admire you for sharing your story to me you have got a wonderful strong character and definitely won't let anyone or anything get you down you are a proper fighter
Good on you girl definitely keep your spirits up and go conquer the world 👍 all the best Lin in South Wales uk 💞 🦋🐕
Its something incredibly hard to cope with, don't worry about crying and having trouble, you're doing amazing
I had Aortic Dissection surgery and that paralyzed me. It saved my life but it caused me to have a stroke so I’m now left side hemiplegic. It’s so strange because my condition is so different than other wheelchair users. My left side is hyper sensitive even though it’s paralyzed and the right side works but my right leg can’t feel heat, (even boiling water) but cold water scalds me. My hand is not as extreme but I can still feel heat just not as much as the left side. I can’t walk but I can stand up. I speak normally though.
💫😇
You are amazing. You are definitely a fighter and you were absolutely meant to be here on this Earth to share and inspire others. 💕 Thank you for sharing your story with us.
This was just recommended to me and I’m so glad it was ❤️
Right?! Me too! I have been following Gem for over a year and I had no idea that she had EDS like me!
Ur so brave for telling us it must be so hard to talk about luv u
Watching this video . I wish you the very best and God bless you and keep on keeping on
Also it’s important that you continue to see an adult congenital heart defect specialist for life
This saddened me Gem. I'm sorry this happened to you.
Thank you for sharing this. I can relate to so much of it. I especially liked you talking about the voices. I always felt there was a radio somewhere that was just at the edge of my hearing. The song was “comforting” but I couldn’t quite hear the words. My roommate at the time told me not to tell anyone for fear of being locked up :)
This video make me sad, but your smile is so beautiful and full of power, I think you have been lucky enough to be so clever and good quality speech.
Hugs from Italy
you had me crying with this story.But you are the best youtube I have ever watched.
Vic Powe same
@@thentherescaroline8180 thanks for the support
do you have tiktok
Vic Powe yes
@@thentherescaroline8180 what is it
Vic Powe why
Hi Gem! Thank you for sharing your story, even when it was hard. I really appreciate you sharing your stories and shedding light on various disability and mobility issues. I actually also have EDS, which causes my joints to dislocate multiple times a day, and I use a wheelchair part time. It's really nice to have you to look up to!
You obviously had things to do. Great things. It's so brave of you to tell the story. Going over traumatic memories is hard.
Agreed!
Thank you for sharing your story. This had to be hard. Glad you survived all that. 9 minutes without oxygen wow. Strong fighter for sure.
Girl , you are such a strong girl !! So proud of you ♥️♥️♥️♥️♥️♥️♥️♥️♥️ amazing amazing woman x
God Bless you, Thank you for sharing your story. It takes a strong, brave, and incredible person. Like yourself. To push threw all you have. I was left without the full usage of a limb. One day at age 12.
And after a 20 year fight. I will loose my leg this week. Finally. Thank you again.
Thank you for sharing this. It is obviously a very painful thing to re-live. You are obviously a fighter and have chosen to fight not only for yourself but for so many others as well.
Hi, Gem! I just happened to come across your channel, and your lifestyle videos intrigued me as a nondisabled person who works in theatre venues in the United States that are striving to be more fully accessible to our patrons. I saw you posted this story of your spinal cord injury, and truly I was moved to tears by the grace and candor with which you told it. Reliving painful memories is hard enough, but yours is an important story to tell and as a person being educated by your experience, I want to express my gratitude for your sharing.
- Cara from Chicago
You are so incredibly brave to be able to explain this to us, you inspire me so much!
i have eds, specifically heds. it mostly affects my hips, fingers, and knees. it also causes pots, and some stomach issues.
Same here! And I just posted a video referencing one of Gem's awesome hacks without knowing that she has EDS. Crazy!
I am crying watching this ,,, purely because I find your positivity and strength amazing and I've got so much admiration for you
I just found your channel, you are an amazing fighter. I always believe the universe puts people in your life at the right time. I’m battling some new chronic health issues in addition to the laundry list I have had for years and yesterday I broke down and was not sure I could do this. You have restored my faith in myself. Thank you so very much. Huge hugs to you ❤️💜💓
Awe thank you for sharing, I know that was hard. You are a beautiful woman and an inspiration and can I borrow some of that hair?
Girl you have the most gorgeous hair which I’m sure you hear all of the time!
What products do you use you should do a hair product video or maybe you already have?
Have you done a video about how you met your husband?
I would love to hear your love story video about your relationship and how you met etc. you have a beautiful family as well.
I have watched your videos and I loved them I love Disney World so much, we went there on our honeymoon and stayed at the Polynesian this year will be our 25th wedding anniversary!
So Disney has a special place in our hearts.
I also loved watching your dancing adventures when you went to California just recently that was so amazing that you traveled alone, good for you!
I really admire and look up to you.
Hugs your way! ❤️
I love you and I am so glad you made it, im sorry you had to go through that but I'm glad you did. I am personally proud to work in the same field as that surgeon who managed to pull you back from the brink in your ICU room and while I am yet to finish the video I di hope you consider it all worth it
Thank you so much for sharing such a personal story and one that’s clearly difficult to talk about. It shows the kind of gentle, caring soul you have that you hope to help others and I’m sure there will be many who find comfort and valuable insight after watching this 💗
I’m so sorry this happned to you!
It might be worth doing genetic testing to really find out if you have Vascular EDS (I have Hypermobile EDS) because if you have that you need to be under constant monitoring since it’s really dangerous!
Wow, your story is so incredible. I'm happy you're still with us! I have hyper-mobile EDS, although I haven't yet had the genetic testing to rule out VEDS. I appreciate your videos so much. I'm a part time (almost full time) wheelchair user and your videos have helped me so much, I can't even tell you. Thank you for being so open and vulnerable and sharing your amazing story with us.
God bless you. You're beautiful and inspiring.
Thank you for being so honest and telling your story. It take pure strength and guts to put this out there and I’m sure your story will help many or may be similar to someone. So much respect for you 🤗🥰🤗
You comment reflects my sentiments exactly!
Wow, you really opened yourself up. You are a strong person.
Have you ever been checked for EDS? Your story reminds me of vEDS with all the tissue fragility; just a thought. Thanks for sharing your story! Your awesome, Gem!
Edit: I clearly wrote this before I came to the end of the video when you mention vEDS haha!
thats so interesting you mentioned it before I did. I probably should get check out. x
@@Wheelsnoheelshopefully your gp will refer you due to your history as it is best to know xx
LOL I was seconds away from posting a comment about EDS too before she said it! Too funny! I feel like us EDSers are pros at spotting it with just a little bit of information. Which makes me so angry that it takes doctors so long to catch it.
Your amazing! The same exact thing happened to me when I was 13 only it wasn't to do with my heart your a fighter! X
Loved the video (I'm also disabled, albeit invisibly, and I know how hard it can be to talk about the source of that disability), but I was wondering if you would consider captioning your videos? Google's automatic captions don't seem to be very accurate, and it makes your video(s) much, much less accessible.
Thank you for sharing your story Gem, I think it could really help others who find themselves in a similar situation. Wishing you all the best, thanks for your informative videos!
I got mad respect for you. Hang in there buddy. Things will feel better soon. I promise.
From what I know they still do health screenings at schools. Even in middle school. I graduated 8th grade in 2017 and I had a yearly check by the school nurse from kindergarten to 8th grade. That was 3 years ago, I think they still have it.
It different in England
Hi Gem, I've also got EDS. You should definitely be having some ongoing care and monitoring. Please, please get referred to a rheumatologist xxx
Greetings from a fellow EDSer!
Hello Eds club
You’re awesome and definitely a strong fighter. Thanks for sharing your story. I stumbled upon your channel in my recommendations (probably because I also have a heart condition/had heart surgery and have EDS). I love your attitude of just living your life and making it the best it can be. That’s exactly what I live by. People often ask me how I’m not afraid of death (my heart condition is a genetic sudden death syndrome that has already killed my aunt, my mom’s cousin, and caused my mom to have 3 sudden cardiac arrests). I tell them I just want to live my life as best I can, however long I get to live. Sending you much love from Canada.
You go girl! I have EDS too (and sudden death heart conditions run in my husband's line), so facing the possibility of dying young is definitely something that we have to come to terms with.
Thank you for sharing such a very personal vlog with us.
I have to admit I cried during this story. Although my complications have not been anywhere near as severe as yours, I related to this story. I am 19, and have had about 7 surgeries - both abdominal and orthopaedic. I had a lot of medical issues growing up, starting as early as I can remember and it really got severe at about 13. I was diagnosed and had surgery for Endometriosis at only 14, when most of my friends had never menstruated before. I would repeatedly snap and stretch ligaments in my ankle (from just playing at lunch times), to the point I had damaged both ankles so bad my mum had to carry me into the doctors. It wasn’t until I was 16, I was diagnosed with EDS. That diagnosis took 12 years. I was finally able to see surgeons, specialists and physiotherapists who could help me & that same year I had my first ankle reconstruction. Due to this, I have a wheelchair but am still struggling with accepting that I am disabled, so I only use it when I have no other option. Thank you for sharing your incredible journey ❤️
Thankyou for sharing your story with everyone that takes strength and courage
Thank you so much for sharing Gem! This was really emotional to watch. You are so strong and inspirational- thank you for being so open and honest, and advocating for all of us disabled 💙
What a story.... bless you
They did a few screenings at my school. I remember once the public hospital came and took blood tests from everyone to check for sickle cell. Which was a good thing because a decent amount of students either had sickle cell or the trait. Most people don't bother getting tested until they start having health problems. They also checked for diabetes
Oh shit, didn't see the EDS coming! That's what I've got.
You’re so brave, you should be so proud of yourself x
I was going to comment about vascular EDS!! then you said it! its actually pretty important to get checks ect. Theres a doctor in London called Doctor Hakim who's really great with is, he would see you for free, he writes most of the papers for the EDS society.
Same here! I was literally seconds away from posting a comment suggesting EDS and then she said it. Too funny!
Thanks for sharing your story, i enjoyed listening to you.
Thank you for sharing your story. Stay strong and sweet.
You are a miracle and I am so happy you are here.
5:17 I HAVE THE SAME SCAR
I mean, my heart surgery went fine so I ain't complaining, but this is the first time seeing someone with the exact same type of scar.
by looking at you i can see that you are a very strong minded person, and very very beautiful:) wow
Thank you so much for sharing your story with us. I know it takes a lot of strength, thanks! xx
Your videos give me so much hope for life I have cerebral palsy not at all as severe but thank you for this! ❤️❤️
When you was 6 here it's named a „big heart catheter“. There they can go through arteries and with a camera and perhaps a filter like a balloon to open up venes and arteries near. It's so much better than the catheter with camera beginning at your arm..
So so sorry to hear what's happened to you its so sad keep up your so good video's your a great person happy days a head 🤩🤩❤
I have to have yearly heart exam so I understand the neck ultrasound
I have EDS mine affects my joints and my hips pop out when I sit for to lobg and my ankles slip in a way where it’s bone on bone it really sucks
Gabby Petro I have Eds and my joints hi the same! My shoulders, too. Mostly my knees, though. Luxating patellas and wiggly joints are a bad combo 😳
Greetings from a fellow EDSer! It's crazy to think that I have been following Gem for so long and just now discovered that she has EDS!
Yup constant joint pain sucks!!
Bless you.
watching this as someone with two open heart surgeries under their belt is kinda scary ngl. I liked the bit about ultra sounds bc they really do try to choke you with the sensor ESPECIALLY when youre small.
Gem I teared up watching this! You have such a beautiful spirit and I have to say I am amazed at how you've persevered through this; it must have been so scary. You're a badass!
Your so strong. An inspiration. It must have been so hard to do this but i was so interested in hearing your story. Carry on being awesome 🙌
This is absolutely crazy, my dad had a coarctation of the aorta that they only caught when he was in his thirties, it’s extremely rare to find an adult with a coarctation. I’ve never heard of anyone else having this. So sorry this happened to you!
My mum has it as well it was picked up when she was 18, 41yrs ago now. Hope your dad is doing well. I haven't heard of many people with it as well. Hope you got yourself checked out for it when your dads was discovered.
Emily Swalwell I have not yet, I was only five when they found his, but I’ve been thinking about getting a whole cardiac work up done recently as we haves lot of heart problems in our family
You are a fighter ❤ thankyou for sharing your story with us, keep fighting and shining your light on this world 💫 this was hard to watch without crying, I'm so sorry you went through this x
Just found your channel and watched a couple of your episodes. Thank you for sharing your story, I'm looking forward to watching all of your videos.
I was diagnosed with Cauda Equine 14 years ago and had surgery 13 years ago, sadly I left it to late to see a doctor, typical male or more likely I was terrified it was MS. Nett result is I have problems walking, I have chronic pain.
Your birthday is one day after mine. And also thank you for sharing this story
You are such a warrior, so strong!! Having vEDS makes you #zebrastrong and I think you're an inspiration :)
I had surgery to remove a tumor from my ear when I was 8. I did not really understand that it was major urgent surgery because although the tumor was benign, it was growing and the doctors felt we had very little time before it grew into my brain and caused brain damage. It did not hit home to me that I really dodged a bullet until a year later when I had a recheck and all my family and doctors were so relieved that there was no sign of regrowth. I had had multiple previous surgeries and issues with my ear since birth so it was just another ear thing for me. But although the surgery left me deaf in that ear, it likely saved my life.
Also, I have EDS although not the vascular kind. I strongly encourage you to get genetic testing to confirm or rule out vEDS both for your sake AND your daughter’s.
Although there is no ongoing treatment for veds, knowing you have it is vital information for first responders and ER personnel in case of an accident or emergency.
Even though I have the hypermobile type eds, my doctor has warned me that I am at a higher risk for dissections, aneurisms and organ rupture. So for example, I was having shortness of breath, pain in my chest wall and lightheadedness. Although both the doctor and I were pretty sure it was caused by an asthma flare up, he ordered an urgent CT scan to be sure there was no sign of aneurism or dissection simply because I have EDS. After that came back clean, he did a chest xray which showed I had pleurisy. In a non eds patient, he would have not done the CT scan unless there were additional symptoms.
And since eds is genetic, it will be important for your daughter to know if the gene for veds is in the family.
shywolf4 I also have non vascular EDS. I think it’s really important that you mentioned the genetic side!
I heard you explain this situation before and I still my heartaches for your childhood.im standing with you as you tell this horrific event. I wish I could hand you a tissue. Wasn't it weird though with them going thru your groin? When I had brain surgery they went through my groin to repair aneurysm in my brain. I was dumbfounded. But when they explained I guess it makes sense. The only other time they scared me so bad was when they did surgery to install a pump in my spine cord and they didn't know it was leaking. That is the worst pain I ever felt. It feels like your brain is going to explode. However, you have created a site were people can go and discuss things with others going through the same things. Thank you for that. Now, onwards and upwards folks.
Thank you so much for sharing your story.💕
Brave lady.
You dear sweet soul. I hope this isn't speaking out of turn, but watching you I wonder if there's an element of post traumatic stress going on for you? Only thinking as I've had emdr therapy for that very reason, and it helped hugely. Like, I didn't think it ever would but I had to have it as I'm having surgery soon and they want me in my best mental state for that. But it's a massive trauma you have had in your life, and sharing with you about the emdr therapy actually might really help. It might be something to pursue one day x
You are amazing! So inspiring!
I will continue to watch your Disney Videos as you are able to make them...