My joints dislocate 60 times a day - born different
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Date: 2023-09-12
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Comments and reviews: 30
Amanda
I was born to a girl who was 15 years old and I have several birth defects including a very severe case of generalized ligamentous laxity that when I was diagnosed by the Orthopedic MD, he said it was WORSE than 95% of the world's population. We're all on something known as the Bell Curve statistically speaking. Some of us are MORE flexible than others, others are less than the average person. Ehlers-Danlo Syndrome is a condition where there are several different types of connective tissue variations. Some are much more severe than others. They are all genetic. I walk with crutches myself. Depending on where you live, there are nonprofit organizations that provide information to the families and there is research being done in major medical centers. I wish this young lady ALL success with her future and family! Warmest regards from Greensboro, NC USA! As well as to ALL the other people who suffer with these problems around the world -
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I was born to a girl who was 15 years old and I have several birth defects including a very severe case of generalized ligamentous laxity that when I was diagnosed by the Orthopedic MD, he said it was WORSE than 95% of the world's population. We're all on something known as the Bell Curve statistically speaking. Some of us are MORE flexible than others, others are less than the average person. Ehlers-Danlo Syndrome is a condition where there are several different types of connective tissue variations. Some are much more severe than others. They are all genetic. I walk with crutches myself. Depending on where you live, there are nonprofit organizations that provide information to the families and there is research being done in major medical centers. I wish this young lady ALL success with her future and family! Warmest regards from Greensboro, NC USA! As well as to ALL the other people who suffer with these problems around the world -
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LauraBidingCitizen
I have EDS & Fibromyalgia. I decided not to have children as there was a 50/50 chance of passing on the condition, but I completely respect those who choose to have babies. I feel my own calling in life was to be a mummy & that-s a decision I-m going to have to live with.
It-s very hard to navigate life when you haven-t got that support system around you. Support means so much with a condition like EDS, just purely for the lack of support medically for the condition but also the mental & emotional toll it takes too.
I lost my own mum very suddenly in January, & it was confirmed after her passing she had EDS, which I already knew but ti have it verified was of some comfort. She was the only person I related with, it-s not just my 76 year old father & I, we muddle along, but he can only understand to a degree & he has his own life to lead.
Sending you many blessings, fellow zebra. Your family is beautiful. X
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I have EDS & Fibromyalgia. I decided not to have children as there was a 50/50 chance of passing on the condition, but I completely respect those who choose to have babies. I feel my own calling in life was to be a mummy & that-s a decision I-m going to have to live with.
It-s very hard to navigate life when you haven-t got that support system around you. Support means so much with a condition like EDS, just purely for the lack of support medically for the condition but also the mental & emotional toll it takes too.
I lost my own mum very suddenly in January, & it was confirmed after her passing she had EDS, which I already knew but ti have it verified was of some comfort. She was the only person I related with, it-s not just my 76 year old father & I, we muddle along, but he can only understand to a degree & he has his own life to lead.
Sending you many blessings, fellow zebra. Your family is beautiful. X
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Tiffany
I have EDS and I also suffer from joint dislocation regularly, especially in my jaw joints while I'm eating. Another daily struggle is walking down my staircase. My ankles dislocate at least once while walking up or down. The struggle is real so I understand everything she is going through. Doctors are just recently learning more about this disease. It also affects my heart, my vocal cords and the way that I am able to consume and digest food.
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I have EDS and I also suffer from joint dislocation regularly, especially in my jaw joints while I'm eating. Another daily struggle is walking down my staircase. My ankles dislocate at least once while walking up or down. The struggle is real so I understand everything she is going through. Doctors are just recently learning more about this disease. It also affects my heart, my vocal cords and the way that I am able to consume and digest food.
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Lauren
EDS is wild man. I have it too, I only sublux occasionally but I have severe POTS because of it. The spectrum of variability is insane. I can-t imagine dislocating this often it-s already painful to have slipping loose joints. She-s so strong, this disability gets in the way of a lot so the fact that she persists is amazing
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EDS is wild man. I have it too, I only sublux occasionally but I have severe POTS because of it. The spectrum of variability is insane. I can-t imagine dislocating this often it-s already painful to have slipping loose joints. She-s so strong, this disability gets in the way of a lot so the fact that she persists is amazing
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Maria
Aww what a beautiful family! I am in awe people who have to live in pain everyday. Someone like me who is a whimp when it comes to pain and yet you are living life to the fullest, making memories with loved ones, just positive energy. I am so sorry you are in so much pain. It breaks my heart. I'm sorry. -
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Aww what a beautiful family! I am in awe people who have to live in pain everyday. Someone like me who is a whimp when it comes to pain and yet you are living life to the fullest, making memories with loved ones, just positive energy. I am so sorry you are in so much pain. It breaks my heart. I'm sorry. -
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Twisted
I have EDS and I thank you for covering Danielle-s story. While my dislocations are mild, I do have mobility issues as well as gastric problems. Getting a diagnosis is so difficult. It-s a genetic disorder and I wasn-t diagnosed until I was 36.
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I have EDS and I thank you for covering Danielle-s story. While my dislocations are mild, I do have mobility issues as well as gastric problems. Getting a diagnosis is so difficult. It-s a genetic disorder and I wasn-t diagnosed until I was 36.
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truly
Gosh. my body's broken apart at 23. but I cannot imagine this. so painful. I legitimately couldn't imagine it. blows my mind how strong she is, she's an awesome person who will do amazing things in life, I just know it. She's a legend.
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Gosh. my body's broken apart at 23. but I cannot imagine this. so painful. I legitimately couldn't imagine it. blows my mind how strong she is, she's an awesome person who will do amazing things in life, I just know it. She's a legend.
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Rainefallen
I have hEDS and I could never imagine dislocating that much. I sublux occasionally and my joints get very tired quite easily so I can-t work, but my type of EDS feels so so mild compared to hers that I almost feel lucky.
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I have hEDS and I could never imagine dislocating that much. I sublux occasionally and my joints get very tired quite easily so I can-t work, but my type of EDS feels so so mild compared to hers that I almost feel lucky.
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Sharon
My daughter 23 has EDS. She has arthritis on every single joint. She also dislocates shoulders elbows knees and hips. Exercise helps keep her muscles big enough to hold her joints together. Good luck with your condition
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My daughter 23 has EDS. She has arthritis on every single joint. She also dislocates shoulders elbows knees and hips. Exercise helps keep her muscles big enough to hold her joints together. Good luck with your condition
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Chelle
I live with this too. Curious about the thumb surgery- would you recommend it? Been suggested that I get it but been holding off as I am a musician and wasn-t sure it would leave me with the necessary dexterity
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I live with this too. Curious about the thumb surgery- would you recommend it? Been suggested that I get it but been holding off as I am a musician and wasn-t sure it would leave me with the necessary dexterity
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SATAN
Why do this woman get children? Ehlers Danlos syndrom is hereditary. I feel sorry for her.
But I think it's selfish with the knowledge that it's a risk that the child will suffer by this disease.
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Why do this woman get children? Ehlers Danlos syndrom is hereditary. I feel sorry for her.
But I think it's selfish with the knowledge that it's a risk that the child will suffer by this disease.
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LifeInPictures
This people should be put on this chanel not all the wemen that did nasty things to go from bottom to the top. Stop promoting all wierd and unbalanced people and promote what really maters.
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This people should be put on this chanel not all the wemen that did nasty things to go from bottom to the top. Stop promoting all wierd and unbalanced people and promote what really maters.
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TMM
I have EDS as well. It is wretched. But, it's great to see representation because people think I'm lying when I discuss what my life is like. Honestly, I can't believe what my life is like sometimes.
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I have EDS as well. It is wretched. But, it's great to see representation because people think I'm lying when I discuss what my life is like. Honestly, I can't believe what my life is like sometimes.
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Bettina
I wish they'd talk honestly about pain and how they control it on these episodes. So many of us have a chronic condition and learning about how people control their pain may be helpful.
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I wish they'd talk honestly about pain and how they control it on these episodes. So many of us have a chronic condition and learning about how people control their pain may be helpful.
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Anneal
I have this condition but way less severe. Its the worst in my wrists that frequently are in terrible pain if I move them too much. Its really anoing because I love to draw and craft.
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I have this condition but way less severe. Its the worst in my wrists that frequently are in terrible pain if I move them too much. Its really anoing because I love to draw and craft.
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Ask
I cannot complain at all on how I look now. There is this woman that has this awful condition and still gave birth! Wow. I really need to start living and stop hiding under a rock!
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I cannot complain at all on how I look now. There is this woman that has this awful condition and still gave birth! Wow. I really need to start living and stop hiding under a rock!
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CupcakeKrystle
I think the most powerful thing she said was that her partner always believed her. That's so, so important as a person living with invisible illness. Validation is key!
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I think the most powerful thing she said was that her partner always believed her. That's so, so important as a person living with invisible illness. Validation is key!
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Aaron
Damn cant even imagine how much pain. this poor woman is in everyday of her life. Also being scared you could dislocate something without doing anything man thats tough
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Damn cant even imagine how much pain. this poor woman is in everyday of her life. Also being scared you could dislocate something without doing anything man thats tough
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Serendipity
I see dislocate and think OMG SOMEONE WITH HYPERMOBILE EDS LIKE MEEEEE. The awarness means so much to me- this must be so painful, but you-ll push through -
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I see dislocate and think OMG SOMEONE WITH HYPERMOBILE EDS LIKE MEEEEE. The awarness means so much to me- this must be so painful, but you-ll push through -
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Sheena
I'm sorry to see your condition; how troubling it must be but I'm glad for you that you are still accomplishing your goals in life. Stay strong. God loves you.
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I'm sorry to see your condition; how troubling it must be but I'm glad for you that you are still accomplishing your goals in life. Stay strong. God loves you.
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Geraniaceae
My lifelong compadre, EDS! I have this loathsome condition. It's such a joy to have a body made out of tissue paper, kite string and flour paste.
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My lifelong compadre, EDS! I have this loathsome condition. It's such a joy to have a body made out of tissue paper, kite string and flour paste.
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Jayne
I had the same problem when I was younger, not now though! But never 60 x per day! Just once in a while! Was always my right elbow and either shoulder!
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I had the same problem when I was younger, not now though! But never 60 x per day! Just once in a while! Was always my right elbow and either shoulder!
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Francesca
You're making the best of a bad situation. Yvie Oddly also suffers from this syndrome and has created something quite amazing out of it.
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You're making the best of a bad situation. Yvie Oddly also suffers from this syndrome and has created something quite amazing out of it.
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Lo
I'm hypermobile and have probable eds as well. I can't imagine that many dislocations. I just sublux mainly now after 4 labral repairs.
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I'm hypermobile and have probable eds as well. I can't imagine that many dislocations. I just sublux mainly now after 4 labral repairs.
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JBoo
Mine does this too at least 20 of which are my shoulders at night over n over. I was diagnosed with Ehlers Danlos Syndrome in 2013
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Mine does this too at least 20 of which are my shoulders at night over n over. I was diagnosed with Ehlers Danlos Syndrome in 2013
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Melanie
Omgosh! I had the same issue with both my shoulders. My knee wants to dislocate sometimes- ugh I feel so bad for you.
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Omgosh! I had the same issue with both my shoulders. My knee wants to dislocate sometimes- ugh I feel so bad for you.
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Nia
I also have this and associated issues you mention. My heart goes out to you lovely. Stay strong you are not alone xx
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I also have this and associated issues you mention. My heart goes out to you lovely. Stay strong you are not alone xx
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Nomadic
Just out of curiousity. how is she overweight if she can barely eat? is this an effect of the condition or?
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Just out of curiousity. how is she overweight if she can barely eat? is this an effect of the condition or?
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Eunae
She will never mourn her disability. Sorry, app developers with How to Correctly Complain and Lament apps!
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She will never mourn her disability. Sorry, app developers with How to Correctly Complain and Lament apps!
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No
Someday I want to be as confident and positive as she is when it comes to my disabilities. She-s inspiring
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Someday I want to be as confident and positive as she is when it comes to my disabilities. She-s inspiring
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