Holt-Oram

For people affected by HOS

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

Latest Activity

Rhiannon Lucas posted photos
Feb 20
Rhiannon Lucas posted a discussion

Hey :)

Hi guys, I thought I'd introduce myself. My name is Rhiannon and I have HOS. I came across this website and I can't believe how many people actually have HOS! I've only ever known 2 other people and they are my Mum and Nana (It runs in the girls of my family).Anyway, I'm 20 years old from Swansea in Wales although I'm currently studying in Southampton. I was born with an extra digit in my right thumb and four fingers with no thumb on my left hand. I had a small hole in my heart which was fixed…See More
Feb 20
Rhiannon Lucas updated their profile
Feb 20
Becca Evans commented on Becca Evans's album
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Exciting times!

"Thank you Monica!"
Feb 17
Monica McGarry commented on Becca Evans's album
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Exciting times!

"Congratulations to you both, Becca! How exiting. I hope all goes well and enjoy it all. Monica"
Feb 17
Becca Evans left a comment for Becca Evans
"Hi Mika, I'll send you a private message with my email address Xx"
Feb 14
Becca Evans posted photos
Feb 14
Lindsey updated their profile
Jan 23
Becca Evans commented on Raimonda's photo
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svytejimas

"Gorgeous photos x"
Dec 15, 2014
Raimonda posted a status
"I look forward to a heart transplant. i hope i get young and strong heart :)"
Dec 7, 2014
Raimonda posted photos
Dec 7, 2014
Geraldine Lane is now a member of Holt-Oram
Nov 21, 2014
Becca Evans replied to Becca Evans's discussion Membership to the site
"I just heard back from Ning. It looks like we can continue with our existing rate of $239.90 so we have enough for another year! Thank you all so much! The extra money will stay in the account for next year xx"
Nov 21, 2014
Becca Evans replied to Becca Evans's discussion Membership to the site
"We now have $295.40 in our account. Ning have changed their pricing plans and I can only seem to access them in £! The new plan is £18 a month which I think is approximately $338.56 for the year. I have emailed them a couple of times to…"
Nov 20, 2014
Becca Evans replied to Becca Evans's discussion Membership to the site
"Another incredibly generous $100 donation! I am officially overwhelmed! Thank you so much everyone. Your donations make this website possible :-)"
Nov 20, 2014
Becca Evans replied to Becca Evans's discussion Membership to the site
"Another 3 donations have come in, totalling $35! Thank you so much for your generosity! My dream is to make this group a registered charity but in order to do that in England you have to have a bank account with £5000 in! I'd love to be…"
Nov 20, 2014

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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Hey :)

Started by Rhiannon Lucas Feb 20.

Membership to the site 25 Replies

Started by Becca Evans. Last reply by Becca Evans Nov 21, 2014.

using genetic testing to have a non-HOS effected baby--our story 6 Replies

Started by Katie Gano. Last reply by Felicia Love Nov 17, 2014.

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