Family describes struggle with stiff person syndrome l GMA
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- Опубликовано: 18 май 2023
- Ayli Dunk, who is 14, endured seizures, hallucinations and her body freezing in place before her diagnosis of stiff person syndrome, the same disease that singer Celine Dion was diagnosed with.
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#celinedion #stiffpersonsyndrome #health #gma 
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Good job Mom for following your gut and not giving up! May God continue to bless your daughter and family!
How about blessing her with a cure? Your imaginary friend is useless.
@@williamwilson6499 it’s not useless
The god hasn't blessed her
But "DOCTORS" don't really HEAR you, many think you are "DRUG SEEKING"!
I was diagnosed with this disease over two decades ago. Fast forward to two years ago I took the first treatment to try to slow this disease down but my body rejected it and did the opposite. So I am really glad that the treatment worked for this 14 year old girl. I get super embarrassed when I forget words or scream out in pain when having spams. Will keep all that suffers with this disease and the family members who stands by their side in prayer 🙏
I’m so sorry you have to go through that. I wish there will be soon some type of advance in the field to help you. I really mean that ❤️. I also have an autoimmune thing, it’s not quite as striking as this one but it does give me a lot of pain and it’s embarrassing as a young woman who wants to just live her life. I totally understand the frustration. Sending you good vibes ❤️
@@MarieJcan Thank you so much! Sorry you are going through something similar as well. I will keep you in my daily prays as well and hope for some type of relief or cure soon! With much 💕 and take care of yourself! 😘
awww, im so sorry to hear you suffering I'm keeping "you" close in prayer,,
please don't ever feel bad for forgetting words or screaming in pain.. poor you,, praying;
God please send comfort, healing & remission to this dear person here..in Jesus precious name Amen
ps...sending you much love Virtual,,,and big 🐻 hugs 🫂
@@m.hensley-panlilio671 Thank you so much! You are very kindhearted! I needed that more than you know! With love Virtual! ❤️❤️❤️❤️
Way to go Mom!👏❤️ prayers and blessings to your family🙏
What a super super mum you are for not giving up and not being ignored. I hope the health of your lovely daughter continues to get stronger
That is so scary. Blessings to mom and daughter. I was at a cvs picking up my medication when I was in line behind a mom like this one. She was passionately advocating for her daughter to get her meds immediately which was earlier than her insurance would allow and they were to help her not reject the kidney the mom just gave her and yes she lifted her t-shirt and showed us the recent scar from the kidney donation. I thought we were gonna start a go fund me at the store everybody could see it was truly life or death for her daughter. What an amazing mom both ladies are.
this headline and the description are misleading this little girl has two different diseases with two different types of symptoms nowhere in the headline or the description does it mention the encephalitis only in the video if you look up stiff person syndrome symptoms you don't see hallucinations but encephalitis symptoms have hallucinations which means the hallucinations were from the encephalitis not the sniff person syndrome so say someone else that has stiff person syndrome looks this up your gonna scare them into thinking they're going to have hallucinations and memory issues they're not that's not a symptom
I agree and I was confused too when I heard about all the crazy symptoms they were discussing in the video.
Exactly!!! Very confusing. Video did not make clear IF there is a connection between autoimmune Stiff Person Syndrome and autoimmune encephalitis “ Brain on Fire” hallucinations etc. So the treatment AE is high dose steroids but is that the treatment for Stiff Person Syndrome also?! Does this little girl have both conditions apparently?! I have had in hospital major oral maxillofacial jaw surgery ( along with standard orthodontia) and it was very painful and no eating solid food for 6 weeks but I truly do not believe that has caused either of the above autoimmune conditions. I was 19 years old at time of my surgery. Does anyone ( medical doctor) know if their is a connection between those 2 diseases?! Thanx
@@betseyfelton8303 yall are a little challenged. the 14yr old only has stiff person syndrome. They mentioned the movie bc the confusion around what was happened to their daughter reminded them of the move brain on fire. which prompted her mom to reach out to to doctor who helped on the movie...which then led to her daughter getting proper treatment
I'm glad she did that for her daughter. I had to do the same for myself. I, too, was diagnosed with a bad Autoimmune Disease. It took me 3 years to fight for an answer. I finally got one! If you know something isn't right with how you feel, then keep fighting like this Mother did for her daughter!!!
Hi how are you
A change in diet is often part of the cure.
It helps but there is no cure just managing it and slowing it down with the proper medication .
So so happy for the family. Wishing this beautiful lady complete recovery ❤
No one will fight for you like a mom, that's amazing yeah God bless moms❤
Not all moms.
No love for Dad's... I know some that will fight just as hard
Amazing that the mother reached out to those famous doctors and even more so that they responded!
A friend's granddaughter has this. The family is glad attention is being brought to this disease. When the granddaughter is in the hospital, the staff/nurses have no idea what she's talking about. She's even been accused of making it up or being a hypochondriac by the medical staff.
Good job Momma!!!!! I hope Celine is also doing well. She's given us so much. It's heartbreaking.
Me too sis 😢🎉🙏🏾🙏🏾
What an amazing mom. God bless her daughter. Prayers for Celine Dion
I think about Celine Dion every single day and I'm so saddened by this diagnosis for her she is such a sweet loving talented woman and a great mother and with such a wonderful wife there's not enough money in the world to cure this the pain she is going through is unimaginable I'm just sickened by it I hope they find a cure no one should suffer like this like ALS also
How do you know she sweet or loving those p are elites for all you know it’s gods will for a reason … stop assuming you know someone because they have nice singing skills it’s exhausting
@@siomi2701 Your rudeness is whats exhausting!
I would love for Celine to have been the great performing singer that she was like Tony Bennett was when he was in his 70's,being still a great singer instead of an awful functioning condition at the age she is now.
@@siomi2701 Every interview she’s given for decades demonstrates her kindness and sincerity. She is known to be incredibly kind to those who work for her. She’s made it clear that motherhood is the most important thing in her in life. And she is one of the most generous singers ever - spending hours signing autographs and meeting fans. On top of that, she is very humble - but always confident in her abilities as a performer.
@@smw4020 Don't bother, he/she is just a sad and bitter person.
I’m so happy for you Ayli you are a warrior!
Such a beautiful and brave young lady who is lucky to have a strong Mom!
Awe god bless her what a miraculous recovery go girl your smashing it and proving anything is possible well done to her Mom what a trooper 👍
Glad this teenager is doing better.
Hoping Celine Dion will be able to get her symptoms under control and lead a quality life. She loves to perform so I hope she will be able to return to the stage and recording studio soon... but only because it brings her so much joy. She is such a beloved icon. Her new music for the film Love Again is beautiful!
Yeah. Creating music is more important than her health. Stop being so insensitive.
@@Michelle-pn9xt Of course her health is the most important. Celine has made it clear in her statements since announcing her diagnosis that she WANTS to be back onstage as soon as possible doing what (she feels) she was born to do. I’ve been a lifelong fan of hers, and I want nothing but the absolute best for her.
@@Michelle-pn9xtlmao reading comprehension is not your forte eh?
What an amazing mom. God bless her daughter. Prayers for Celine Dion. I’m so happy for you Ayli you are a warrior!.
Wow!! 😮 What a beautiful outcome!!
It would be really nice if Celine Dion would meet this little girl!! Give each other some encouragement and inner strength!
This brought tears to my eyes!
This momma was very persistent, and it paid off!!
I had autoimmune encephalitis as well... Short term memory loss and seizures. I still have them til this day
Wow my heart, I didn't think it was going to be something so serious. Thank God for his mercy towards us. Glad she's getting treatment
It’s such a shame we have to do all this work. And jump through hoops just to get some answers from the medical field. So frustrating! Glad they figured it out and she’s getting help
What a great doctor!!
We just lost my brother in law from this disease! He is at University of Tennessee now, for research on this terrible disease! Maybe some good, can come out of it, that might help to find relief for the others that have it! God Bless!
That’s wonderful. Go mom for moving mountains to help your daughter
That's right! Nothing like a mother's LOVE!!
Praying for her 🙏
Great story and lesson to be your own advocate and to advocate for your family when they cannot.
Bless their hearts. That mom is a hero.
My heart is with that sweet lil girl and all that suffer from these misfortunate anomalies no matter how rare❤🌱💯
Wow thank goodness they were able to diagnose her illness and find her the right treatment!! The poor girl and her family for having to endure this. God bless them and the medical community, I’m so happy to see that she has her life back
Amazing mom! ❤
You have advocate for your loved ones and yourself. Now this sweet daughter can live a much more normal life. I pray that Celine Dion can have this as well.
God bless her and her family
The human body is something else. I mean wow!!! Sending love to her and her family, and others who deal with this. Reading up on how Celine has been doing led me to this. Wow 🙏🏾☹️
I pray healing upon her life she's been an amazing entertainer I grew up listening to Celine Dion and I pray she lives longer with or without the syndrome
Awesome doctors! A great, clear diagnosis!
Thank god for her ability to get somewhat better. God bless
Thanks life, this mom did the best for her girl. I wish them the best!
Prayers for Celine 🙏🏼
Amen.
Great news! So happy mom was on it fighting for her daughter
Beautiful story of recovering-against all odds- to see her family & her smiles - many other miraculous recoveries - Ms. Celine surrounded by 💞"🎶🎼" warm embraces nourishment love one's vitality beyond measure.... ❤❤❤
I suspect Ayli was in excruciating pain so many times before this was treated - imagine having muscle cramps all over your body, all the time...I have annoyingly elastic tendons that sometimes pull my calf and hand muscles into the wrong position (it looks like they are popping out) and even in those few seconds before I can do the manual repositioning it is agony. She seems to have recovered really well and I'm so glad for her.
I'm so glad her mom saw that something wasn't right. I'm so sad that the family has to go this. I hope that somehow this young girl will somehow make it through.
Omg so happy for this family what an amazing mother. The world is your oyster Amy
God bless her
I hope and pray she & Celine will be healed
Bless this baby ❤️❤️❤️
Wow!! Good story. ❤👍
Celine Dion is one in a Million
Oh bless her heart! I hope she only gets better from here😊😊😊😊❤❤❤❤❤
Wow congrats to the super mom. What a happy story.
Glad she's better
Im so happy for you guys!! ❤❤
Her resemblance with her mother is so striking
Happy for Her! 😊
Amazing mama....
Lord have mercy!! So sad, but hopefully these doctors can help who ever has this.
Wow, so scary. ❤❤
I pray Celine Dion’s people would see this and contact the same doctors. I pray n wish healing on every human with ill or failing health. 🙏🏽.
She looks just like her mother! Good for her and she’s lucky to have a mother that didn’t give up on her condition or accept it.
Excellent ❤❤
Amazing story
Oh thank you, God, and all the medical staff who brought that magnificent little girl back to a measure of normalcy. God bless her and her family. It wasn’t “the stress of jaw surgery” but a microbe that got in and her immune system attacked it, possibly also an effect of anesthesia.
It the stress. Stress kills. For us with rare autoimmune diseases with no cure. Stress can cause our bodies to have a reaction against our immune systems. Yes the stress from the jaw surgery could have set her body in a spiral.
yeesh, such a relief to hear that story turn around by the end
They said it started with jaw surgery. Curious to know more about that and the connection maybe it had to do with a nerve the Doctor affected around the jaw, it's all nerves there. I think the cause is here important to delve into more and her surgery, especially in such a young age.
I guess it could have triggered certain nerves, but at the same time, that wouldn't cause this illness, it would just trigger symptoms. It could even have been from stress.
I have SPS. There are several theories, but cause is still unknown. The majority of SPS patients are positive for the GAD antibody (60-80% depending on references).
You're right!!
Thank goodness.
The one time when saying " I saw it in a movie" worked out.
Celine since the passing of René is not the same. She also lost her parents, close siblings and other family members. Grief too much heartache and sadness leave traces in your body. She has to take care of herself.Others need her she cannot let herself go.
I am so saddened that anyone has to deal with pain like this.
Poor Ayli. ❤❤❤
God bless.There is nothing like a Mothers love.
I hope Celine is doing well. 😢
An ANGEL mom!
Woooow.!!❤❤❤
AMEN! MOM!
God bless
Wow!
Such a cruel Syndrome
May all sufferers have a better quality of life
God Bless Hailey
@@bobbyraymond1565 The Middle East,Amman Jordan 🇯🇴
wow,,she so lucky the mom did her just duty.....thanks to everyone who did the right thing
So true amen
Thank you God for helping this little girl through science.❤
Your right there’s no love like a mothers love ❤️😊
oh my heart ohhhh my god i can't this poor girl jesus oh my god
Good job mother
A Miracle
Am sure Celine is fighting with this with the best help. 😢
awesome cure
I'm glad the mom figured it out but they're two different diagnoses or the same thing? The headline is what?
Why was Celine Dion brought into this story? This girl didn't have the same disease or symptoms.
Click bait !!! 🤦♀️
Her mom.....HERO!!!!!!!!! As well as that doctor!!!!!!!!!
So happy this beautiful girl is doing so great! It seems as thou Celine Dion started suffering after her husband’s death. I wonder if the stress of working too much and the loss of the love of her life triggered her disorder. 😢
😢😢❤❤
amen🙏
Thank God they found something.
God please fully heal them. Thank you God
messing with chemicals in the brain and body is a huge risk. I suffered something that was paralyzing me as a teen. Its very scary. The drs said it was in my head too.. and I just got worse. Eventually my mom and aunt decided to take things into their own hands and did a load of research. I managed to heal over a period of 4 years and the 1st year was the toughest. I
It was a vaccine that caused my injury
@@rebekkaliebenberg3618you don't know that for sure it could have been an illness
OMG! I'm reading "Brain on Fire" right now and didn't realize there was a movie. That's such a scary diagnosis!
Unfortunately the stress of 8 years of college and 4 grueling years of residency is u realisifor her!