Butterfly Children: Living With Extremely Fragile Skin | Full episode

[@traebee333]

I've watched countless EB videos and this one is the most informative and raw ones I've seen. Sending all my Love to anyone with EB and their caregivers 🙏

[@shahnazkabir1]

My heart goes out for you...moved me to tears ...May Allaah cure your children and give you patience. I really feel for you

[@moonlight-xc3nf]

I'm also a epidermal bullosa patient . Our entire family has genetically acquired it from my maternal mother and i just could relate so much to everything..avoiding walking, going through all that pain. All love and strength to you

[@laljichawda7516]

May beby is eb pensht plis helpmi

[@moonlight-xc3nf]

@@laljichawda7516 i hope she gets better soon...for my case whenever you have blisters put your hand or feet in cold ice water...it takes around 3-4 days to diminish...if after walking she starts feeling skin burning sensation then start putting your legs in cold water...so that you dont develop blister..it can be reduced earlier....after walking it is much better to take precaution and put your leg in cold water everyday cause it then takes body heat out... Rest wear slippers so that her skin can breathe...and if she has to wear shoes..i usually buy a loose shoe and put an extra shoe sole inside so that it becomes more soft...nd easier to walk. Rest we dont have treatment...if a blister is very big...let that blister dry for a week..until burning sensation reduce till then put her feet in ice cold water then...you can sterilize a needle and prick it a bit so that the water inside it gets out which wl lead it to heal soon..but dont prick it when its fresh cause that makes it pain more. Rest ultimate treatment is walk less on hot days....blessings and gd health to her.

[@venkadesan153]

@@moonlight-xc3nf is possible to contact you.we need more ideas and information

[@Haticecakmak5235]

Merhaba arkadaşım benim yeni doğan bebeğimdede bu durumda bir tedavisi bulundumu

[@Haticecakmak5235]

Sizinle nasıl iletişime geçebilirim

[@Panda-fp8tv]

❤ promoting is the key and public speaking. People needs to hear the voice.❤

[@soukiia.]

He’s so cute tho at the same time 🥺

[@tumblerlai5482]

Hi , I see that halfway through the video , your family was at parkway . Is your family staying at the east ? If so , could I be of any help

[@kellykim3684]

This looks like one of the most painful Illnesses

[@Muhasin00786]

My late elder brother had this same condition, my heart goes to all the families who have a member with this rare condition. We are the lucky ones as ALLAH Swt gave us such a rare family member so we can take good care of them.

[@brendaseager7371]

They call this condition rare and yet it seems you hear more and more cases of it. I pray to god they can find a cure or find the cause to stop it before it starts.

[@GorillaWithACellphone]

@@brendaseager7371it is rare, there may seem like a lot of people with it but there’s over 8 billion people on earth and only a few million have this condition. EB itself has many different types, some only causing blisters after walking long periods or in certain temperatures. The type that causes full body blisters from slight trauma (I think it’s the dystrophica type) is pretty rare.

[@user-ks3uq8nc7u]

This is so sad :(

[@fr2045]

Why do people cry about people famous while people die everyday and dont give to shits

[@brendaseager7371]

I wish god would delete this condition or give someone the knowledge to discover a cure! No child should have to cope with this condition and the pain it causes every day of their life. Give it to me ,I would take the pain for every child with this condition if that were a possibility. Children are innocent, children are pure, why does nature do this to some children? No child should be made to suffer, if I were a rich person I would give all I have to find someone who truly was dedicated to if not cure, ease the pain of this condition. I will never understand?

[@kellykim3684]

The parents must feel so much guilt even though not their fault that they carried the genes

[@tiarachivers]

💗

[@Panda-fp8tv]

There is many different kinds of the decease.

[@JesusLovesHisCreations]

Hi, I m a freelance educator, do let me know how can I help....just my transport fees when I m there to teach is good enough..., i can't offer my assistance financially but time n effort is all i can offer..... btw try having garlic in ur food...is good for ur immune system 😊 keeping u all in my prayers 😊 take care...God bless...

[@Haticecakmak5235]

Tedavisi bulundumu bilginiz varmı benim yeni doğan bebeğimdede var

[@Usman07804]

Ya Allah

[@Amy-gh8lw]

Unfair

[@Fido-vm9zi]

Read a story about an inability to get supplies due to sanctions. Was wondering about finding a guide, sponsor or some way to manufacture supplies in Iran. Forgive me if this is not possible, as I do not know all logistics & issues surrounding the situation.

[@idontcarei]

39:13 how rude

[@Elif-ph2jg]

They found a condition for this disease plss go there

[@Haticecakmak5235]

Nasıl bulmuşlar arkadaşım bilgi verirmidiniz lütfen 🙏

[@ajokeoyekanmi3692]

32:14 The child died😭😭💔 Custom whyyy

[@kitchenofmothercare]

White Water Company - Nanobubble Hydrotherapy #NanobubbleHydrotherapy

[@kiyawika2889]

im Raed

[@s.s.annaiteresaladiestailo9744]

EB treatment

[@imranwsayad]

Still not

[@bhavagynalakshmi4890]

I think it will cure in india

[@sylvia8112]

♥️