Holt-Oram

For people affected by HOS

A site for people who have or have an interest in HOS.

Latest Activity

Asmaa Elkhateeb posted a status
"Hi every one here"
Jul 17
Profile IconKeeley Hensley and Asmaa Elkhateeb joined Holt-Oram
Jul 17
Juan Carlos Cano Mellado posted a blog post

Hello. My daughter is HOS

Hello to everyone. My name is Juan Carlos, I am 42 years old and I am a father of twins. One of them has HOS..., my wife and I created the Association ANAHO (National Association of those affected by Holt Oram), also created the website www.holt-oram.es and blog anaho.apps-1and1.net  All this to give visibility to the 'problem' of our little Princess and locate new cases, cases that we have located along this small world. I leave the links to our website…See More
Feb 9
Becca Evans posted a status
Feb 9
Profile IconJuan Carlos Cano Mellado and Heidi Grassi joined Holt-Oram
Feb 9
Monica McGarry commented on Dennis Aspö's photo
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Merry christmas

"Merry Christmas Dennis to you and your family too!"
Dec 15, 2015
Dennis Aspö posted a photo

Merry christmas

Stolen from my fiances facebook feed, wanted to repost it here too.
Dec 14, 2015
Dennis Aspö commented on Dennis Aspö's photo
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Daniel with new thumb

"Indeed it will. Can't wait for christmas and to see how he starts using his thumb over the next year."
Dec 14, 2015
Kassy M posted a status
"Has anyone ever had a small heart attack? Or heart pressure/pain?"
Dec 11, 2015
Becca Evans posted a status
"And we still have $379.64 in our account so we should be fine next year too! X"
Dec 11, 2015
Becca Evans posted a status
"We're all paid up for another year! Thank you everyone, it wouldn't be possible without you! X"
Dec 11, 2015
Becca Evans posted a status
"We now have $619.54 in the Holt Oram account! Thank you so much everyone who has donated! Xx"
Dec 11, 2015
Becca Evans posted a status
"I'm overwhelmed and a little bit emotional at your generosity! Thank you Geraldine Lane, Dennis Aspo and William Arnold!"
Dec 11, 2015
Becca Evans commented on Dennis Aspö's photo
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Daniel with new thumb

"So having the splint off will be a lovely Christmas present! X"
Dec 11, 2015
Dennis Aspö commented on Dennis Aspö's photo
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Daniel with new thumb

"Hi, he doesn't really use it yet. He can't actually since he must keep the thumb in a splint until christmas eve, doctors orders so it will heal in the right position."
Dec 11, 2015
Becca Evans commented on Dennis Aspö's photo
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Daniel with new thumb

"Looking good! How's he doing? X"
Dec 10, 2015

Members

 

What is Holt-Oram syndrome?

Also known as heart-hand syndrome this condition has a lot of different permutations. People with HOS often have upper limb growth abnormalities which can range from being very minor to having parts of arms / fingers / thumbs missing. Often the collar bone is also quite small. In about 75% of cases the heart is also affected, this can be in a variety of ways, ranging from normal function to VSD / ASD, conduction disorders, holes in the heart etc.
Holt-Oram is listed as a rare disease and is estimated to affect 1 in 100000 individuals. HOS is caused by a mutation of the TBX5 gene, this mutation can occur in people with no history of the mutation in their family. HOS is an autosomal dominant disorder which means that only one copy of the mutated gene needs to be passed on in order for a child to inherit the condition, this makes it a 50% chance that the condition will be passed on to children.

This information has not been put together by a health professional, this is simply my understanding of the condition I have. If you feel that there are mistakes in what I have written please let me know and if you want more detailed information please see one of the links.

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Forum

Having HO and wanting children 8 Replies

Started by Tammy. Last reply by Melissa Brodie Nov 1, 2015.

Satisfied with your hands? 1 Reply

Started by Dennis Aspö. Last reply by Becca Evans Oct 21, 2015.

Hey :) 2 Replies

Started by Rhiannon Lucas. Last reply by Sallie Rebecca Humphreys Oct 21, 2015.

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