ฝัง
- เผยแพร่เมื่อ 8 ก.ย. 2024
- 💚 FOP (Fibrodysplasia Ossificans Progressiva) is an ultra-rare disease that turns muscle into bone, obstructing movement and hindering lives: ifopa.org/what...
🌎 The International FOP Association (IFOPA) is here to help find a cure through funding research, raising awareness, and supporting the community: ifopa.org/abou...
👋🏽 CONNECT:
IFOPA
/ cure_fop
/ ifopa
/ international-fop-asso...
📬 Sign up for the newsletter and stay on top of the community and the path towards a cure: ifopa.org/connect
👨👩👧👦 Register for the next Family Gathering: ifopa.org/fami.... Relive sessions from past Gatherings: ifopa.org/fami...
🛠️ Check out the Ability Toolbox Guidebook featuring tools and home adaptations for independent living: guidebook.ifop...
📆 Get involved with our family services, fundraising and awareness events: ifopa.org/cale...
📗 Learn the scientific terminology surrounding FOP in the IFOPA Glossary: ifopa.org/glos...
❤️ DONATE and join us to fight FOP and support families in their journey: ifopa.org/donate
🙋🏽 FOP Frequently Asked Questions: ifopa.org/fop_faq
#cureFOP #RareDisease #disability #RAREParenting #caregiver
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So unfair. Let there be a breakthrough in treating this horrible, cruel disease soon. This young lady deserves a wonderful life.
Jasmin you are a beautiful person and soul.
She's honestly beautiful.
This teaches us all to do what you can, while you can. You don't know what tomorrow brings.
What a tough video to watch. She's strong and beautiful! stay strong Jasmin.
FIX THE GENE!
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..🤗...💓
❤️🙏
Sorry , life can be so cruel to people who don’t deserve it
This is one of the saddest things I’ve ever seen
So is your life
@@steviedub9370 So is the fact that you think that you’re funny.
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?
I think it completely replaces the tissues by bone
Basically the soft tissue calcifies, turning into bone
@Angelic That would explain why the neck and back are frequently effected first. Thank you for the insight.
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.
@Angelic thanks for the explanation
🙏🙏🙏🙏🙏
Hello sir I am from India my sister is also suffer this disability please tell me if any solutions on that disorder....please please
Only medications are on trial right now