For people affected by HOS

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

Latest Activity

Becca Evans posted a discussion

Closing the website

Hi all,I'm sorry to say that I have decided to stop running the website. I have set up a group on Facebook and I hope that members will move over onto the new group. You can find the group here:https://www.facebook.com/groups/362906760707276/The web hosting just costs too much on here and managing the website has become difficult with Ning offering little support. I feel that the group will work well on Facebook and will be easier…See More
Tanaya Davies and Monica McGarry are now friends
Oct 21
Tanaya Davies replied to Tanaya Davies's discussion Pregnancy with HOS
"Hi Bert, My doctor did offer me an operation for my elbows, as I find it hard to accept change as I haven't got the movement there. I declined the operation as there was a 50% chance that the operation would not work and would be stuck in a…"
Oct 21
Bert Henk Vedder left a comment for JANET TATE
"hai there , how are you  ?"
Oct 11
Bert Henk Vedder left a comment for Bert Henk Vedder
"Haha, thank you very much Can  i ask you what give you to most problems ? I mean, do you have problems with your heart ? Or mayby your arms and hands ? Mayby is the word "problems"not correct but i hope you know what i try to say…"
Oct 11
Becca Evans left a comment for Bert Henk Vedder
"I think you're doing really well with your English! It's lovely to have you on the site x"
Oct 10
Profile IconJANET TATE and Nicole Tate joined Holt-Oram
Oct 10
Bert Henk Vedder left a comment for Saskia Bekman
"Top, ga ik zeker doen  dank je wel voor je reactie"
Oct 4
Bert Henk Vedder commented on Kassy McClan. 's photo

My left hand

"Hello Was there not a operation possible ?"
Oct 4
Bert Henk Vedder left a comment for Hanna Patenaude
"Goodday I'am just new on this site and i am from the Netherlands so sorry for my englisch. Me son has HOS and the doctors here in Holland don't tell me so much because the don't know they say. I ask about his arms because they look…"
Oct 4
Saskia Bekman left a comment for Saskia Bekman
"Beste Henk, een aantal jaar geleden heb ik i.v.m. erfelijkheid bij mijn zoon opnieuw mijn dna laten onderzoeken. Ik blijk geen Holt-Oram te hebben maar een mutatie op mijn ihh eiwit en brachydactyly type A1. Mijn zoon heeft deze mutatie gelukkig…"
Oct 4
Bert Henk Vedder replied to Tanaya Davies's discussion Pregnancy with HOS
"Hi Tanaya Iám happy to see that you life a "normal"life and that everything is going well with you My son also have HOS and the same problems with his elbows, he also miss hiss chestmuscle and both of his thumbs. Did the dokter try…"
Oct 4
Bert Henk Vedder left a comment for Becca Evans
"Hai Becca, Iám from holland and my son ( he is now 1 year) has HOS The docters here realy dont now so much about this and i realy want to know more and sometime;s talk with people how know how its like to have a child with HOS. I also like…"
Oct 4
Bert Henk Vedder left a comment for Saskia Bekman
"Hallo Saskia Hoe is het met jou ? Ik zou graag met je in contact komen ivm mij zoontje die holt oram heeft en er eigenlijk zo weinig over bekend is zou dit mogelijk zijn ?"
Oct 4
Bert Henk Vedder is now a member of Holt-Oram
Oct 4
Becca Evans replied to POLO Ryan's discussion my baby boy
"What's your son called? How's he doing now? X"
Sep 22



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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Closing the website

Started by Becca Evans on Monday.

Pregnancy with HOS 2 Replies

Started by Tanaya Davies. Last reply by Tanaya Davies Oct 21.

my baby boy 3 Replies

Started by POLO Ryan. Last reply by Becca Evans Sep 22.


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