For people affected by HOS

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

Latest Activity

Erin's mom replied to sarah t's discussion SHOULDER PROBLEMS?
"Hello my daughter is 6 and her shoulders 'pop' in and out also.  We recently did updated xrays because her shoulders looked different to me.  Her right shoulder has no humeral head so basically her humerus doesn't actually…"
Jeanine May and Stephanie Meyer are now friends
Aug 22
Jason Kendrick and Eric R Gumulak are now friends
Aug 16
Becca Evans left a comment for Tiffany La Chance
"Hi Tiffany, When's your baby due? :-) Becca"
Aug 11
Tiffany La Chance is now a member of Holt-Oram
Aug 11
Becca Evans replied to Becca Evans's discussion Useful finds!
"I'm pretty sure that Next offers international delivery too!"
Aug 11
Monica McGarry replied to Becca Evans's discussion Useful finds!
"Becca, that is great! I always buy tops and blouses in UK because that is where I find 3/4 sleeves. Long sleeves for me. :  )"
Aug 7
Becca Evans updated their profile
Aug 7
Becca Evans posted a discussion

Useful finds!

Hi all,I've been looking for ages for a waterproof jacket, it's always tricky to find ones that work with short arms but I found this one that is perfect! http://www.next.co.uk/x542154s1#672967x54The sleeves roll up and are secured back with…See More
Aug 7
Becca Evans replied to Jennifer's discussion Introduction
"Hi Jennifer, It's good to have you on the site :-) Becca"
Jul 29
Jennifer posted a discussion


Hi all,I am 29 years old and have HOS.  Both the physical and cardiovascular presentations are fairly severe.  I started with open heart surgery, then a pacemaker, and currently have an ICD.  I'm completely independent, graduated college, got married, and I'm finishing up my PhD in Aerospace Engineering.  I'd love to hear from some of you.  I'd be more than happy to share any of my "life hacks" for those of you with younger ones just starting on the journey.  While my life has been a little…See More
Jul 28
Jennifer is now a member of Holt-Oram
Jul 27
Becca Evans commented on Dennis Aspö's photo


"They're gorgeous!"
Jul 24
Dennis Aspö posted a photo
Jul 24
Dennis Aspö posted a discussion

Genetic tests

A little update on the boys. Extended genetic tests came back a while ago and indicated a slight deviation in the area that H-O mutations tend to occur, doctors say it is unique, nobody else they know of in their international database has this.We are not sure if it actually has any meaning or not, we've taken blood tests all of us now and they will see if anyone of us has it. if we do then the geneticist claims that means it doesn't have anything to do with the boys condition because then…See More
Jul 24

Julia Weston just added their location.
(via Member Map)

Jul 21



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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Started by sarah t. Last reply by Erin's mom on Wednesday.

Useful finds! 2 Replies

Started by Becca Evans. Last reply by Becca Evans Aug 11.

Introduction 1 Reply

Started by Jennifer. Last reply by Becca Evans Jul 29.


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