Jasmin's Story

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Int'l Fibrodysplasia Ossificans Progressiva Assoc

Int'l Fibrodysplasia Ossificans Progressiva Assoc

Күн бұрын

Пікірлер: 26
@cartoonvandal
@cartoonvandal Жыл бұрын
So unfair. Let there be a breakthrough in treating this horrible, cruel disease soon. This young lady deserves a wonderful life.
@wrestlingfan2024
@wrestlingfan2024 Жыл бұрын
Jasmin you are a beautiful person and soul.
@LBPreviews
@LBPreviews 10 ай бұрын
She's honestly beautiful.
@nataliemay415
@nataliemay415 2 жыл бұрын
This teaches us all to do what you can, while you can. You don't know what tomorrow brings.
@LordCowboyCat
@LordCowboyCat 3 жыл бұрын
What a tough video to watch. She's strong and beautiful! stay strong Jasmin.
@ClaimClam
@ClaimClam 2 жыл бұрын
FIX THE GENE!
@krysomish
@krysomish Ай бұрын
Я 6 лет назад то же самое слышала от работающих над лекарством. Почему так медленно все происходит у них?
@IFOPA
@IFOPA 26 күн бұрын
The clinical trial process does take many years. The companies and then the regulatory agencies (like Russia's Ministry of Health, US FDA and EMA) want to make sure that there is enough data to make sure it's safe and that the benefits are worth the risk of taking the drug. They also have to make sure there is a way to manufacture and deliver the drug to patients once it's approved. If you have more questions, email us at together@ifopa.org
@thehot1911
@thehot1911 2 жыл бұрын
This is one of the saddest things I’ve ever seen
@steviedub9370
@steviedub9370 Жыл бұрын
So is your life
@Periwinkleaccount
@Periwinkleaccount Жыл бұрын
@@steviedub9370 So is the fact that you think that you’re funny.
@David-u6v7m
@David-u6v7m Ай бұрын
A beautiful spirit young lady. Like my daer mother.she tried so hard fop took so much from her. God's word gave her strength.jesus will help you to fight.lord jesus help I pray. Neither of parents could wslk
@chichodormi4732
@chichodormi4732 2 жыл бұрын
❤️🙏
@steviedub9370
@steviedub9370 Жыл бұрын
Sorry , life can be so cruel to people who don’t deserve it
@ludwigvanbubthoven5692
@ludwigvanbubthoven5692 3 жыл бұрын
I don't understand, does bone completely replace the soft tissue, or does it just form within and on top of the tendons and muscles?
@valentinbrunet109
@valentinbrunet109 3 жыл бұрын
I think it completely replaces the tissues by bone
@billblaski9523
@billblaski9523 3 жыл бұрын
Basically the soft tissue calcifies, turning into bone
@ludwigvanbubthoven5692
@ludwigvanbubthoven5692 3 жыл бұрын
@Angelic That would explain why the neck and back are frequently effected first. Thank you for the insight.
@realcreature3D
@realcreature3D 2 жыл бұрын
BOTH! It both replaces some muscles and connective tissues and it ALSO forms its own bone-infrastructure across joint areas, preventing movement. Incorrect connective tissue cellular signaling starts the process and old or damaged connective tissue cells are not replaced properly. Normal babies are able to grow with few problems, beyond the malformed toes and possibly small, firm lumps beneath the skin that may migrate across various regions of the body, for months or years, but at some point these connective tissue areas begin signalling to be repaired (apoptosis) as though they are already areas of bone, and they send signals to be repaired and replaced as bone. Since the connective tissues are NOT bone, FLAREUPS happen due to the bone repair cells grouping together as though they're lost - they just sit near the region where they were requested by the connective tissue. Since no actual connective tissue repair cells were requested or sent, the areas that need repair continue to incorrectly signal for bone cell repair, and more incorrect bone cell replacements are sent, but after so many cells gather, the body eventually accepts these incorrect bone repair cells as viable, independent bone structures. The best research would include dynamically sampling the cells at the sights where connective tissue incorrectly transitions to bone, but getting these samples can cause catastrophic damage to the patients.
@natckwan
@natckwan 2 жыл бұрын
@Angelic thanks for the explanation
@sharonjacobs5351
@sharonjacobs5351 Жыл бұрын
J...just so special A...always a light S...so courageous M...mighty, mighty warrior I... inspiration to many N...never gives up hope Thank you sweetheart..🤗...💓
@norsen12
@norsen12 2 жыл бұрын
🙏🙏🙏🙏🙏
@shardbade3984
@shardbade3984 Жыл бұрын
Hello sir I am from India my sister is also suffer this disability please tell me if any solutions on that disorder....please please
@samleddon4406
@samleddon4406 Жыл бұрын
Only medications are on trial right now
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