Holt-Oram

For people affected by HOS

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

Latest Activity

Becca Evans replied to POLO Ryan's discussion my baby boy
"What's your son called? How's he doing now? X"
Thursday
POLO Ryan replied to POLO Ryan's discussion my baby boy
Sep 9
POLO Ryan replied to POLO Ryan's discussion my baby boy
Sep 9
POLO Ryan posted a discussion

my baby boy

undefined my baby boyy!!! he so strong......See More
Sep 9
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
Thumbnail

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
Thumbnail

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

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

my baby boy 3 Replies

Started by POLO Ryan. Last reply by Becca Evans on Thursday.

Pregnancy with HOS

Started by Tanaya Davies Aug 25.

Having HO and wanting children 8 Replies

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

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