Children with Guillain-Barré Syndrome
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- čas přidán 27. 08. 2024
- GBS is common in people of all ages. If you know a youth, teen, or young adult with GBS or CIDP, learn more about our YTA program at www.gbs-cidp.o...
Questions about Guillain-Barre Syndrome (GBS), CIDP, or a variant of the condition such as Multifocal Motor Neuropathy? Or perhaps you'd like to request more information? You’re in the right place. Please connect with us below, and a GBS|CIDP Foundation International representative will get back to you within 48 hours:
www.gbs-cidp.o...
For more information: www.gbs-cidp.org/
GBS Survivor here. Diagnosed this year. Sharing my recovery stories on my Channel Stay safe & healthy, turtle warriors! ☺️
I was 12 years old when I came down with GBS in 1968. Back then no one know what to do......I recovered 80% of my lower extremities. I am so glad that they have this foundation and their resources to help educate new survivors.
I was also 12 yrs. old when I came down with GBS. I'm about 90% recovered. Still have drop foot which is difficult to get rid of. At 73 yrs. old I have incorporated A.F.O. for my foot drop. Hope it helps.
My name is Peter.
I'm lying in the hospital right now because I have GBS. It was a real shock to me when I learned what could happen.
Thanks to my doctors here in Germany, I have been able to avert the worst.
I can walk again and slowly work my way back into life.
Hi Peter im Emilio from México, i would like we have a conversation about GBS if you want some advice or anything ill do, im a patience in 80% recovery.
Peter Klawikowski hey peter I would like to talk with you about the gbs and ur experiences too as I would love to be able to relate with some one who also suffered from what I did if we could do so that would be really appreciated
Daniel Montgomery Hi, Daniel,
I'm sorry I didn't write to you sooner. I would love to have a conversation about GBS.
Sonay Szg besten Dank!
Emilio González can we have a chat ? WhatsApp ? I’ve got GBS too
I got that when i was 15. It started as a migraine then it went to fever. I have not received shots before that. It was scary not knowing at that time what was really happening and why was it happening. The experience was very traumatic being the only one awake in the ICU. Trying to walk again and poop was hard but trying to pee was the hardest. I was on catheter for a month after i was discharged from the hospital. Having to pee by myself...without catheter is one of the most joyous times i have ever experienced. That time, i thought to myself that that was the sign that i am back to my normal self.
Trisha Joy Damaso yeah I received the same treatment, it was definitely a really scary time, especially for me and where I grew up, cause I’m from the uk and it’s pretty small, and not many people knew about it 10+ years ago and it took many people to find out what was going on
Dear Daniel, I'm Chloe and I am reaching out to you on behalf of a CIDP organisation. Currently they are looking for children with CIDP to conduct a study to understand their problem and feedbacks to create a better support program holistically. Would you be kind enough to send me you email and phone number at chloe.nguyen@guidepoint.com so i can further discuss this. This will be a 45-60' phone discussion and the usual payment is 250-350 USD/hr.
Dear Trisha, I'm Chloe and I am reaching out to you on behalf of a CIDP organisation. Currently they are looking for children with CIDP to conduct a study to understand their problem and feedbacks to create a better support program holistically. Would you be kind enough to send me you email and phone number at chloe.nguyen@guidepoint.com so i can further discuss this. This will be a 45-60' phone discussion and the usual payment ijs 250-350 USD/hr.
i feel reading your stories i am not alone. I contracted GBS on April of 2021 at the age of 63. I thought I would never walk again. I would like to thank all those who helped me in my recovery...my wife and son. Especially, I would like to thank all the staff at the Siskin Rehabilitation Center in Chattanooga. TN. The only thing I did not go through was going through the birth canal lol. Those who have gone though GBS knows. I cannot finish without saying but by the grace of God I am walking today, thank you Lord. I hope one day to meet you at one of the annual GBS Convention. I pray that Almighty Father thought your body and restore those nerves and muscles to become alive and function like new. Amen and God bless James
Happy to hear that he recovered and is involved in the Foundation. Keep on keeping on!
I am 14 years old and I have been suffering from GBS for 3 months. They keep treating it and it keeps coming back. They don’t really know why it keeps coming back but needless to say this was the worst summer ever. Thank you GBS. Very cool.
I am Australian Male, then about 48yo, I had a warehouse job and we had for the past couple of days been doing a stocktake. I had been climbing up and down the racking counting anomalous stock. The third day my muscles were sore and I had 'pins and needles' in my hands and feet but put it down to using muscles I had not used for a while and that I'd be back to normal after a couple of days. Wrong! After barely 2 weeks I could hardly climb a flight of stairs so decided to seek a Doctor. This was Easter time and the Thursday before Good Friday. My Doctor was a tiny little Chinese lady who, after questions about my illness and performing a 'sharp/blunt' test on my hands and feet, immediately called her Mentor who was the Head of Neurology at Sydney's Royal North Shore Hospital. I was in hospital after seeing him that afternoon. The staff that perform Plasma Phoreces were to have Easter off but one of them decided that my condition was far too serious to wait for four days and volunteered to come in to perform the PP's to halt the syndrome, successful after 3 PP's. I am 74yo now and have regained much of my strength and am still mobile and doing things but it may well have been another story if that wonderful Nurse had not volunteered her holiday to treat my condition. I am forever grateful.
I'm glad he made a full recovery
Pl provide ur number
Thank you. 1 week into my journey and your video gives me hope.
How are you now?
i was diognosed in october 2018 i went from having pins and needles in my hands and feet and a couple days later i couldnt walk talk swallow anything i was rushed to a&e and was transferred to southampton from the iow i was in icu for 12 days on a ventilator. i still struggle to walk to this day i was only 17 at the time. i was also told if i didnt get help the day i did i would not of survived another night
Congrats
My daughter has Gillian-Barre syndrome. She in hospital. I 😢 its very scarrt
I got that when I was 3 yrs old I had to learn everything over again walking talking an eating by 5 I was good but I can never get the flu shot again in my life cause that is what triggered it to go off
Jordan Masterson I got it when I was 5 and I’m the exact same, I’m not sure what caused mine for definite, but we believe it was because I cut myself skate boring, it was agony, and then about a week later I got the pins and Kneedles which honestly was the worst part honestly, it only ever made it to my core, but it did corrode it, and I still have problems with my core activity, but I do believe it made me grow and develop faster or something like that cause at 11 dude, I was like 6 foot, 😂
I got it twice at 2 and 3 and have dealt with it for the past 17 years. I learned how to walk and do basic things . It’s still residual but I do all I can and practice what is hard
I was 20 in 1983. It had to just run its course.
My 14 year old son got this a month ago totally out the blue, drs here in the uk said his is a variant of the gbs syndrome something called miller fisher syndrome so scary as drs are clueless as it’s really rare 🤷♀️
My 3 year old grandson was diagnosed with the Miller Fisher variant of gbs a month ago. He was transferred to St Thomas hospital for 3 weeks and is now home to complete his recovery. How is your son doing? I do hope he is recovering well
@@missb2411 drs now think it’s all covid related as they have seen an increase in cases, my son is recovering but slowly, he’s walking and talking now goes to school but he’s not the same gets tired very easily, I suppose the nerves that have been damaged will take time to recover some nerves don’t recover at all but as he’s young they are very optimistic, hope your grandson gets well soon it’s a very horrible thing to go through not only for the patient but for the family also, what scares me is he will get it again
I absolutely agree with everything you've said. I also believe it is covid related and am hearing of more and more cases recently. I'm really glad your son is getting back some normality and wishing him a full recovery. I heard that the nerves repair at around 1/2 an inch a month ago it can be slow. Also so worried my grandson will get it again but apparently only around 5% relapse. Have you spoken to the charity GAIN? They've been amazing and really make you feel calmer. Sending you lots of positivity. It's so hard watching your children suffer and being unable to help them.
Can salaiva coming continuously?
My twin sister has this she 44
Please help my son he affected by GBS I don't know how to handle this syndrome
My 3 year old grandson was diagnosed a month ago and is now home after ivig treatment. What treatment are they giving your son? It can be a very slow healing process once he completes treatment, GBS also stands for Get Better Slowly. My grandson can now crawl and take a few steps after 1 month. Sending healing to your son and hope for his full recovery.
pray my baby please no have money iam from Ethiopia my family pure please help my baby please
go organic
do not give him medicine
don’t eat meat
Mms jim humble