For people affected by HOS

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

Latest Activity

Roseanne c replied to sarah t's discussion SHOULDER PROBLEMS?
"Hi Sarah, Im 41now but when I was a young child my shoulders would dislocate often but I never told anyone I would just pull it back in and go back to playing. If I had said something then it might have been fixed. As it is I was only diagnosed 4…"
Roseanne c replied to Becca Evans's discussion Rib pain
"Hi Becca when I was 17 I was diagnosed with a pigeon chest on the left side. I also had a lot of rib pain they operated removing the cartledge from each rib it worked but they missed massive ASD. Well you can't have everything :-)"
Sep 16
Roseanne c left a comment for Roseanne c
"Hi Ellen Louise, I'm so sorry that it's taken so long to get back to you. I was so glad to hear from someone in Ireland. Do you have HOS? If so how are you doing? I was only diagnosed 4years ago and then all hell broke loose. I'm…"
Sep 16
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…"
Aug 27
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



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 Roseanne c on Wednesday.

Rib pain 8 Replies

Started by Becca Evans. Last reply by Roseanne c Sep 16.

Useful finds! 2 Replies

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


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