For people affected by HOS

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

Latest Activity

Becca Lane replied to Jennifer's discussion Introduction
"Hi Jennifer, It's good to have you on the site :-) Becca"
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
Jennifer is now a member of Holt-Oram
Becca Lane 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
Kat Weatherston updated their profile
Jul 21

Christian Gronow just added their location.
(via Member Map)

Jul 20
Wendy Landreth updated their profile
Jul 19
Lindsey updated their profile
Jul 19
Wendy Landreth replied to sarah t's discussion SHOULDER PROBLEMS?
"Hi, my son is 9 and had his pollicisation on both hands when he was younger. In the last year his shoulder has started clicking in and out of the joint a lot. He also has to 'click' his fingers sometimes. Our GP has advised physio to…"
Jul 19
Kate McNally replied to sarah t's discussion SHOULDER PROBLEMS?
"My daughter is 13months and is due to have pollicization surgery in October. At the consultation her surgeon suggested that her shoulders are not right because she is missing her ?pectoral muscles (the ones going from shoulder to breast) so her…"
Jul 19
Bea Van Beckhoven replied to sarah t's discussion SHOULDER PROBLEMS?
"Hi, I have HOS too and I've had a period with pretty severe shoulder pain. For me fysiotherapy was useful because the therapist pointed out to me that I had a fairly hunched posture. In this position a nerve got caught in the joined and that…"
Jul 19
Linda Barnett left a comment for Lindsey
"This is a great site.  Welcome.  "
Jun 25
Hanna Patenaude updated their profile
Jun 25



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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Introduction 1 Reply

Started by Jennifer. Last reply by Becca Lane yesterday.

Genetic tests

Started by Dennis Aspö Jul 24.


Started by sarah t. Last reply by Wendy Landreth Jul 19.


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