It all began with a Hannah-Rose
We never planned to build a website, we just wanted answers. When we found out about Arthrogryposis, we had to learn everything the hard way. Now everything we’ve learned lives here for you, for us, for anyone who needs it. It’s real, it’s messy, and it’s full of love and hope . If we can help even one family through our story, it will be worth it. You are welcome to walk this road with us every step matters and you are not alone xx
FAQs
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Arthrogryposis refers to a group of conditions characterised by stiffness (contractures) in two or more joints at birth. It is not a single disease, but a symptom of an underlying cause affecting muscle, joint, or nerve development.
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It can result from reduced movement of the baby in the womb due to genetic, neurological, muscular, or connective tissue problems. Sometimes the cause is unknown.
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In some cases, yes. Certain forms are inherited, but others occur sporadically with no family history.
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Often it can be seen on prenatal ultrasound, where reduced fetal movement or joint contractures are visible, but a definitive diagnosis is usually made after birth.
At 24 weeks in Utero
Hannah-Rose was diagnosed with Arthrogryposis/Amyoplasia, double clubfeet, and hyperextended legs. After birth, we also learned she has hip dysplasia and clasped thumbs. It’s been quite the journey but through it all, she’s determined, happy, content, and unbelievably strong. Despite being told early on that she may never move her legs, that her body would be restricted, and that she could spend her life in a wheelchair, Hannah-Rose has defied every expectation. Today, she moves her legs, feet, and ankles on her own ,nappy time is one of her favourite moments to kick and stretch! Her determination inspires us daily, and we can’t wait to share her milestones with you including, one day, her very first steps 👣