Holt-Oram

For people affected by HOS

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

Latest Activity

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

Monday
Kat Weatherston updated their profile
Monday

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

Sunday
Wendy Landreth updated their profile
Saturday
Lindsey updated their profile
Saturday
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…"
Saturday
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…"
Saturday
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…"
Saturday
Linda Barnett left a comment for Lindsey
"This is a great site.  Welcome.  "
Jun 25
Hanna Patenaude updated their profile
Jun 25
Jason Kendrick is now friends with Lindsey and kabakole
Jun 25
Lindsey posted a blog post

New

I just learned about this site so I don't really know what to say here but I have it, ive never really talked to anyone else whos had this because i honestly never knew there was so many more people with it. I dont really know what else to say but im glad i found this site
Jun 25

Lindsey just added their location.
(via Member Map)

Jun 25
Lindsey commented on Hanna Patenaude's photo
Thumbnail

Brody's Hand

"Hello i just joined this site so I really dont know how to use it yet but that is amazing i never knew you could do surgery like that"
Jun 25
Becca Lane replied to Brent Moore's discussion PLEASE READ: My sons x-rays/ check up on arm and heart
"Thanks for sharing your story. My parents were told my left arm would be useless but when I had surgery on my right arm I began using it (I was lazy and hadn't felt the need before then!). When I was 12 I was told that my shoulders were…"
Jun 25
Becca Lane commented on Hanna Patenaude's photo
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Brody's Hand

"Hi! That's exactly the same surgery as I had at that age! Although it was somewhat experimental back then! Becca x"
Jun 25

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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Forum

SHOULDER PROBLEMS? 5 Replies

Started by sarah t. Last reply by Wendy Landreth on Saturday.

PLEASE READ: My sons x-rays/ check up on arm and heart 2 Replies

Started by Brent Moore. Last reply by Becca Lane Jun 25.

Siobhan lily

Started by Nicola Morgan May 17.

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